Hello... It's been a while, I know but I (daddy) have not been around to know all of the details so not much factual that I can add while away on training.
So... Today there was a family meeting with the doctors regarding Willem's situation and I now have a lot of facts that I have yet to absorb. I will probably not absorb them; I will probably just float on top of them for a while and hope to hit dry land at some point soon.
In summary: the 2nd of 6 genetic test came back negative for the familial form of HLH. This would be cause for celebration were it not for the fact that Willem has not responded to treatment as well as the doctors had expected. Willem is showing no sign that it's familial HLH that he's battling but he is responding to treatment as though he has the familial. It's all very technical and I just shut down mentally -- I got the gist of the conversation: it's serious.
Willem is also dealing with the damaged intestines that are not letting food pass through his entire GI so now he will be getting some serious and pretty invasive surgery on his intestines to bypass his damaged areas so he can, we pray, eat real food again some day soon (months). After the surgery he will be getting a bone marrow transplant but more on that later.
The risks and concerns: Willem is still on chemo because his HLH is still there and fighting to stay. He will have to be taken off chemo for a little bit so that the surgery can be done and he can heal. It is a delicate balance of time and healing that will have to take place so that the HLH does not make an aggressive comeback while he recovers from the surgery.
There's more to say but I shall leave that to future postings. Willem is a medical anomaly and is now known globally; something that comes with the added benefit of the greatest minds working on a singular task and with the added negative that, so mysterious is his illness, the greatest minds are working on a singular task.
In summary? Well... PRAY. Cross your fingers. Send good vibes. Visualize purple energy.
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THANK YOUS
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HUGE Thanks to the Branders for their very generous donation to Willem. Thank you. And a big thank you to Noreen as well. Thank you.
Thank you to all of our wonderful friends and family members who continue to express no limit to the sacrifice they are willing to make to help us and Willem. Thank you all.
Willem -- only days before he was stricken with HLH -- leisurely walking, straw in mouth, not a care in the world. A healthy 9 year old boy.
Friday, December 30, 2011
Monday, December 5, 2011
School, doctor/lab appointments, seeking normalcy, frustration, joy
It has been an interesting week. Our hero's "numbers" continue to track normal (hemoglobin, platelets, white blood counts, and ANC). The ANC number is a combination number, and when Willem was very sick it was 0 (zero). The first day we saw a positive number we were overjoyed as that was the beginning of his slow recovery. Liver, kidney, heart, lungs all doing their jobs beautifully.
He goes to school now from 8:40-12:15. Shannon Kemperman, his teacher has been very patient with us as we try and integrate Willem back into the classroom and at the same time not be a distraction. With some of his appointments we have had to pull him out a little early and Shannon has been great working with us. Academically he is doing well and not as far behind as we might have thought. The school has been awesome accommodating his situation. Thank you Tim Shaw (principal), Monica Kimball the keeper of the gate in the office, and Mrs. K, and all the others involved. We are appreciative of your extra efforts.
With Erin giving him his meds 2 x/day, daily feeds (formula) for 14 hours, and nightly saline for 9 hours, challenges have been many. Most have been with equipment, pumps, bags, hoses, etc. Last week Thursday morning I got a call from Erin early. The pump just kept beeping and had been through the night. There is a procedure to follow if this happens and she did it 2/3 times with no success. I did the same upon arrival with no luck as well. She went through 2 pumps which were delivered by the supplier, 3 formula bags, and a ton of frustration and angst!! Finally the rep/nurse came over and could not get it going either. Oh yea, Lili and Wyatt need to get ready for school and be fed. Tough tough morning for her to say the least. This is just an example of almost daily "situations". We can send a man to the moon and back.....
Willem does still throw up on occasion. Usually it's due to his other tube not draining the bile out of his stomach due to a blockage, gravity, etc. It happen yesterday out of the blue and mhe got very upset and angry. He has been such a trooper and great kid, that a mini breakdown is understandable and, quite frankly, we are surprised we have not seen more. He was fine after a hug and a talk. Kids are so resilient. He keeps bouncing back. He wants to eats desperatly and it almost to the point of all he thinks about.
He gets tired a lot and the doctors are aware of this with no concern. His hair is growing back and on the way to church yesterday Lili was wondering if it was going to come back thick and curly like it was before. We shall see.
We went to an event at the hospital put on and fully funded/sponsored by Delta Airline pilots and their spouses. Pillow pets were handed out. When they gave Willem his, a purple Unicorn which his sister has been asking for, he promptly just turned around and handed it to her!! WOW. He did not know any more were going to be handed out and he did this on his own. Lesson learned. As it turns out all three kids got pillow pets, pizza, pop, and cookies were served, Santa was there and good time was had by all. Thank you Greg Chase and all the pilots and spouses who were there. Really cool thing the public never knows about. Thanks to all.
This a big week. Labs and appointments with a couple of docs this afternoon, then a meeting Weds with the surgeon. Will keep you posted.
Keep thoughts and prayers coming- needed still and appreciated- thanks
He goes to school now from 8:40-12:15. Shannon Kemperman, his teacher has been very patient with us as we try and integrate Willem back into the classroom and at the same time not be a distraction. With some of his appointments we have had to pull him out a little early and Shannon has been great working with us. Academically he is doing well and not as far behind as we might have thought. The school has been awesome accommodating his situation. Thank you Tim Shaw (principal), Monica Kimball the keeper of the gate in the office, and Mrs. K, and all the others involved. We are appreciative of your extra efforts.
With Erin giving him his meds 2 x/day, daily feeds (formula) for 14 hours, and nightly saline for 9 hours, challenges have been many. Most have been with equipment, pumps, bags, hoses, etc. Last week Thursday morning I got a call from Erin early. The pump just kept beeping and had been through the night. There is a procedure to follow if this happens and she did it 2/3 times with no success. I did the same upon arrival with no luck as well. She went through 2 pumps which were delivered by the supplier, 3 formula bags, and a ton of frustration and angst!! Finally the rep/nurse came over and could not get it going either. Oh yea, Lili and Wyatt need to get ready for school and be fed. Tough tough morning for her to say the least. This is just an example of almost daily "situations". We can send a man to the moon and back.....
Willem does still throw up on occasion. Usually it's due to his other tube not draining the bile out of his stomach due to a blockage, gravity, etc. It happen yesterday out of the blue and mhe got very upset and angry. He has been such a trooper and great kid, that a mini breakdown is understandable and, quite frankly, we are surprised we have not seen more. He was fine after a hug and a talk. Kids are so resilient. He keeps bouncing back. He wants to eats desperatly and it almost to the point of all he thinks about.
He gets tired a lot and the doctors are aware of this with no concern. His hair is growing back and on the way to church yesterday Lili was wondering if it was going to come back thick and curly like it was before. We shall see.
We went to an event at the hospital put on and fully funded/sponsored by Delta Airline pilots and their spouses. Pillow pets were handed out. When they gave Willem his, a purple Unicorn which his sister has been asking for, he promptly just turned around and handed it to her!! WOW. He did not know any more were going to be handed out and he did this on his own. Lesson learned. As it turns out all three kids got pillow pets, pizza, pop, and cookies were served, Santa was there and good time was had by all. Thank you Greg Chase and all the pilots and spouses who were there. Really cool thing the public never knows about. Thanks to all.
This a big week. Labs and appointments with a couple of docs this afternoon, then a meeting Weds with the surgeon. Will keep you posted.
Keep thoughts and prayers coming- needed still and appreciated- thanks
Sunday, November 27, 2011
We are grateful to be Home!
As you know Willem left the hospital Friday 11/18 after 100 days!
After getting settled at home he went to school Monday and Tuesday 1/2 day and enjoyed it very much. Just getting to be with his friends and classmates is great for him.
He has a tube port that has two tubes. His "G" tube drains his stomach of bile 24/7. His other tube is called a "J" tube and through this he receives his "feeds" (formula) 14 hours a day and his IV solution 9 hours a day (at night). The G tube is actually placed below the stricture in his upper small intestine just below the duodenom. It is through this tube that he also gets his "meds" twice a day.
He gets numerous (12-13) meds 2 X/day and Erin has done a great job mastering the administration of the meds and keeping it all together. No easy task for sure! She also mixes his feeds, makes sure the pump for his feeds/meds is working (no easy task some days), and oh yes, runs the house-cleans, laundry, food, shuttle driver, etc.
Kaylene from LinCare (the home care provider of equipment and help) was a tremendous help in the very beginning. She came for the first 3 med administrations to show us the way.
Willem has been back to hospital twice for for "clinic". He was there Friday for blood draw and analysis. His numbers are all where they need to be and his chemistry (lungs, liver, kidney, heart, etc.) are all great and were they should be as well. This is more good news for our hero!
Tomorrow he goes back for his chemo and other drugs.
Right now we are waiting to see if the meds will be able to open the stricture. Three weeks ago the doctors told us they would like to give it another two months. We are also waiting for the results of some tissue that was sent to the pathologists in Cinci, OH. It had been a long wait so hopefully we will find out status of that tomorrow.
Also, blood work has been sent to Mayo Clinic (Dr. Abraham) for more testing. She did some intitial work, but is doing more now. She and her team are looking into his "natural killer" cells (we all have these cells). These cells attach themselves to the infected cells through a protein called CD107A which is "absolutely necessary" for the NK cell to attach on to the infected cell and allow the NK cell to attack the infection. They want to make sure at the cellular level that Willem's NK cells are functioning properly. It's all pretty amazing and complicated. We will not have info back on this for 5/6 weeks.
During all this Lili has been going to ballet, tap, and cheer. Wyatt has been doing soccer, basketball, and Cub Scouts (selling popcorn) and generally being Kids. He begins floor hockey tomorrow in place of Bball (his choice!) Both are doing well given the situation. It is Wyatt's birthday (8) on Dec. 9.
Willem can't eat anything by mouth except a small piece of chocolate once a day that he can suck on. When at school and it is snack time this is his snack. Thanksgiving was a little tough, but we scaled way back and did a very small turkey and had turkey sandwiches that Willem made for everybody. We went around the table and asked all to share what they were most thankful for, Willem said "being home". He is where he needs to be for his next phase of recovery.
Keep out little 10 year old hero in your prayers. He is not out of the thing yet.
After getting settled at home he went to school Monday and Tuesday 1/2 day and enjoyed it very much. Just getting to be with his friends and classmates is great for him.
He has a tube port that has two tubes. His "G" tube drains his stomach of bile 24/7. His other tube is called a "J" tube and through this he receives his "feeds" (formula) 14 hours a day and his IV solution 9 hours a day (at night). The G tube is actually placed below the stricture in his upper small intestine just below the duodenom. It is through this tube that he also gets his "meds" twice a day.
He gets numerous (12-13) meds 2 X/day and Erin has done a great job mastering the administration of the meds and keeping it all together. No easy task for sure! She also mixes his feeds, makes sure the pump for his feeds/meds is working (no easy task some days), and oh yes, runs the house-cleans, laundry, food, shuttle driver, etc.
Kaylene from LinCare (the home care provider of equipment and help) was a tremendous help in the very beginning. She came for the first 3 med administrations to show us the way.
Willem has been back to hospital twice for for "clinic". He was there Friday for blood draw and analysis. His numbers are all where they need to be and his chemistry (lungs, liver, kidney, heart, etc.) are all great and were they should be as well. This is more good news for our hero!
Tomorrow he goes back for his chemo and other drugs.
Right now we are waiting to see if the meds will be able to open the stricture. Three weeks ago the doctors told us they would like to give it another two months. We are also waiting for the results of some tissue that was sent to the pathologists in Cinci, OH. It had been a long wait so hopefully we will find out status of that tomorrow.
Also, blood work has been sent to Mayo Clinic (Dr. Abraham) for more testing. She did some intitial work, but is doing more now. She and her team are looking into his "natural killer" cells (we all have these cells). These cells attach themselves to the infected cells through a protein called CD107A which is "absolutely necessary" for the NK cell to attach on to the infected cell and allow the NK cell to attack the infection. They want to make sure at the cellular level that Willem's NK cells are functioning properly. It's all pretty amazing and complicated. We will not have info back on this for 5/6 weeks.
During all this Lili has been going to ballet, tap, and cheer. Wyatt has been doing soccer, basketball, and Cub Scouts (selling popcorn) and generally being Kids. He begins floor hockey tomorrow in place of Bball (his choice!) Both are doing well given the situation. It is Wyatt's birthday (8) on Dec. 9.
Willem can't eat anything by mouth except a small piece of chocolate once a day that he can suck on. When at school and it is snack time this is his snack. Thanksgiving was a little tough, but we scaled way back and did a very small turkey and had turkey sandwiches that Willem made for everybody. We went around the table and asked all to share what they were most thankful for, Willem said "being home". He is where he needs to be for his next phase of recovery.
Keep out little 10 year old hero in your prayers. He is not out of the thing yet.
Saturday, November 19, 2011
Friday, November 18, 2011
AFTER 100 DAYS- WILLEM IS HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
We are happy to let you all know Willem came home today at 3:00 pm. He is with Mom, Lili, and Wyatt and will sleep in his own bed tonight! What a joyous day this is for our little HERO. The last few days have been frustrating as we have been working to get discharged. First there has been a lot of work with the insurance companies and this finally all got resolved this morning.
On Tuesday we had bought a cake and a card for the 9th Floor staff and were going out to present these to them at their work station when Willem's stomach tube port was pulled out by accident by me! If you have ever done something and felt like crawling away into a cave that was me then.
Fortunately the nurse was in the room and she got the tube itself reinserted into his stomach but the port itself had to be reinserted by procedure and the tube positioned back into his intestine. This was done later that day. All was ok until Weds. morning when we all noticed the discharge from his stomach was too light colored suggesting the tube had worked it's way out of his intestine and was in his stomach. Another procedure was scheduled for Thursday under complete sedation. This proved to be successful. Jeff and Jeff the "Pros from Dover" in XRay Fluroscopy are to be commended. They had to get the tube past the stricture in Willem's intestine which proved a challenge, one they surmounted with great expertise.
Needless to say I was not Willem's favorite grandfather or for that matter, person when it first happened. Kids are so resilient and forgiving (we have learned a lot about such behavior from Willem during this time) that we were back on track that evening when I went back and just hung out with him until he fell asleep. He is an awesome kid for sure.
The staff made a big sign and they signed it with personal notes and this will be hanging at home.
Tonight the HomeCare nurse comes over to the house to review a bunch of stuff including medicine delivery, the equipment, etc. with Erin and me. It is all a bit daunting but doable.
We hope to get Willem to school for a short time each day starting Monday, but we have to see how all it goes over the weekend. School is ready if we do this. They have been great to work with.
BIG DAY FOR SURE. He is not healed of the ravages of this HLH disease and they are some obstacles that have to be overcome. We need your thoughts and prayers as he enters this next phase of his recovery.
Erin will need some help with all of this. We're not sure how it is all going to shake out so stay tuned. We will let you know what is needed in a later blog.
We are truly GRATEFUL for so much, and the thing we are most grateful for is the recovery to this point of our HERO Willem, the world's greatest 10 year old on the face of the planet, the moon, the stars, the planets, you get the picture!
Think of you have done the past 100 days. This might put into perspective how long he has been in the hospital. Take care friends.
On Tuesday we had bought a cake and a card for the 9th Floor staff and were going out to present these to them at their work station when Willem's stomach tube port was pulled out by accident by me! If you have ever done something and felt like crawling away into a cave that was me then.
Fortunately the nurse was in the room and she got the tube itself reinserted into his stomach but the port itself had to be reinserted by procedure and the tube positioned back into his intestine. This was done later that day. All was ok until Weds. morning when we all noticed the discharge from his stomach was too light colored suggesting the tube had worked it's way out of his intestine and was in his stomach. Another procedure was scheduled for Thursday under complete sedation. This proved to be successful. Jeff and Jeff the "Pros from Dover" in XRay Fluroscopy are to be commended. They had to get the tube past the stricture in Willem's intestine which proved a challenge, one they surmounted with great expertise.
Needless to say I was not Willem's favorite grandfather or for that matter, person when it first happened. Kids are so resilient and forgiving (we have learned a lot about such behavior from Willem during this time) that we were back on track that evening when I went back and just hung out with him until he fell asleep. He is an awesome kid for sure.
The staff made a big sign and they signed it with personal notes and this will be hanging at home.
Tonight the HomeCare nurse comes over to the house to review a bunch of stuff including medicine delivery, the equipment, etc. with Erin and me. It is all a bit daunting but doable.
We hope to get Willem to school for a short time each day starting Monday, but we have to see how all it goes over the weekend. School is ready if we do this. They have been great to work with.
BIG DAY FOR SURE. He is not healed of the ravages of this HLH disease and they are some obstacles that have to be overcome. We need your thoughts and prayers as he enters this next phase of his recovery.
Erin will need some help with all of this. We're not sure how it is all going to shake out so stay tuned. We will let you know what is needed in a later blog.
We are truly GRATEFUL for so much, and the thing we are most grateful for is the recovery to this point of our HERO Willem, the world's greatest 10 year old on the face of the planet, the moon, the stars, the planets, you get the picture!
Think of you have done the past 100 days. This might put into perspective how long he has been in the hospital. Take care friends.
Monday, November 14, 2011
No News Has Been Good News
It has been a relative quiet week for our Hero Willem.
Much tweaking of his feeds, IV fluids, etc. He is actually up to 100/110 ml of special formula and is tolerating this very well.
He is keeping up with his school work through the help of Susan Meltzer, a teacher at Meadowbrook Elem who has been volunteering her time to come to the hospital twice a week and work with Willem, and Sarah Smith who is the hospital education in house teacher/coordinator. Both of you have been such an important part of keeping Willem at least close to his classmates. Thank you both!
Saturday Willem spent the afternoon at a friends house playing all things Pokemon, Harry Potter, DS, etc. Sunday he went to church and spent the afternoon at his own house with Mom, Wyatt and Lili. All in all a great weekend.
We are waiting for the lab results to come back from Cincinati Children's Hospital. This is where one of the two foremost experts on HLH lives and practices. The pathologists there have been working with this doctor and are very tuned into and familiar with HLH, what it looks like under a microscope etc.
Willem's major medical problem is the stricture (blockage) in his small intestine just below where the stomach empties into the intestine. A few different options are being discussed, one of which they are continuing to do with greater intensity and that is through attacking the stricture with medicine dosage increase. This would be the "easy" solution.
He look great, feels good most of the times, is walking laps in the hospital, and overall "getting better".
Prayers are being answered and he still have some hard work in front of him so pleas don't stop now!
Much tweaking of his feeds, IV fluids, etc. He is actually up to 100/110 ml of special formula and is tolerating this very well.
He is keeping up with his school work through the help of Susan Meltzer, a teacher at Meadowbrook Elem who has been volunteering her time to come to the hospital twice a week and work with Willem, and Sarah Smith who is the hospital education in house teacher/coordinator. Both of you have been such an important part of keeping Willem at least close to his classmates. Thank you both!
Saturday Willem spent the afternoon at a friends house playing all things Pokemon, Harry Potter, DS, etc. Sunday he went to church and spent the afternoon at his own house with Mom, Wyatt and Lili. All in all a great weekend.
We are waiting for the lab results to come back from Cincinati Children's Hospital. This is where one of the two foremost experts on HLH lives and practices. The pathologists there have been working with this doctor and are very tuned into and familiar with HLH, what it looks like under a microscope etc.
Willem's major medical problem is the stricture (blockage) in his small intestine just below where the stomach empties into the intestine. A few different options are being discussed, one of which they are continuing to do with greater intensity and that is through attacking the stricture with medicine dosage increase. This would be the "easy" solution.
He look great, feels good most of the times, is walking laps in the hospital, and overall "getting better".
Prayers are being answered and he still have some hard work in front of him so pleas don't stop now!
Sunday, November 6, 2011
Improvement for Sure Big day Tomorrow
It's been awhile since last we left our hero and he is just that.
Holloween Day- He helped "patient services" pass out flyers on the Big Party @ 2:00 in the hospital
He "power walked" (his words) 6 laps- Did some homework
Took a break then to Party.
He was unofficially awarded the scariest costume. He went as scream with a few weapons of mass destruction (double headed axe, sword, a pretty mean attitude!)
Then to his home and trick or treating in the neighborhood. Quite a haul (none if which he can eat!). He fell asleep 1 minute after he got in the car to come home. Great Day. What a trooper.
Medical Update:
He is off TPN which are vitamins, minerals, etc. he needed. He is getting his nutrition through his fomula feeding of 50 ml/hr which he can tolerate. This is HUGE!
He was out of the hospital Friday, Sat., and today for 4/5 hours each day.
His stomach is continually drained into a bag he carries. This prevents the bile from building up. The few times he has a problem the line has been blocked or kinked.
Tomorrow the surgeons, gastro docs, and the hemotology/oncology docs are all meeting in conference, then with family after. Will fill you in on what we find out. We do know he still has a stricture that is preventing food from leaving his stomach and being digested. Stay tuned for more tomorrow.
Gotta Go. Keep him in your prayers- as you can see it's working.
Holloween Day- He helped "patient services" pass out flyers on the Big Party @ 2:00 in the hospital
He "power walked" (his words) 6 laps- Did some homework
Took a break then to Party.
He was unofficially awarded the scariest costume. He went as scream with a few weapons of mass destruction (double headed axe, sword, a pretty mean attitude!)
Then to his home and trick or treating in the neighborhood. Quite a haul (none if which he can eat!). He fell asleep 1 minute after he got in the car to come home. Great Day. What a trooper.
Medical Update:
He is off TPN which are vitamins, minerals, etc. he needed. He is getting his nutrition through his fomula feeding of 50 ml/hr which he can tolerate. This is HUGE!
He was out of the hospital Friday, Sat., and today for 4/5 hours each day.
His stomach is continually drained into a bag he carries. This prevents the bile from building up. The few times he has a problem the line has been blocked or kinked.
Tomorrow the surgeons, gastro docs, and the hemotology/oncology docs are all meeting in conference, then with family after. Will fill you in on what we find out. We do know he still has a stricture that is preventing food from leaving his stomach and being digested. Stay tuned for more tomorrow.
Gotta Go. Keep him in your prayers- as you can see it's working.
Tuesday, November 1, 2011
Saturday, October 29, 2011
We are Back and Feeling Goodis
Since last post, sorry for the delay, we had much going on.
On Tuesday Willem had a new GJ tubes put in and it was a success. Since that procedure he not thrown up once.
We are truly grateful for this. The ONE tube is in place in his small intestine and through it he is getting his nourishment and meds continuously and consistently. This is critical to his improvement. The other tube is in his stomach area near his duodenum (if not in his duodenum). Through it he is getting the medicine that will hopefully shrink the stricture cased by the HLH. The doctors are watching this closely and will do so for about a week and then do another "contrast" study to see if it has improved at all. At this point he is unable to eat any "real" food until this stricture opens. Will keep you posted on this critical issue.
Since the procedure he is walking a lot more, school work has picked up, and he was able to go a field trip to Party City and buy weapons of mass destruction for his "Scream" Halloween costume, and go home for a couple of hours after that on Friday. This tired him out, but he had a great time. He slept the whole way back to the hospital.
Although Willem is improving he has a long way to go until he is out of the woods and out of the hospital. He will not be going home anytime soon, but the docs have given us permission to schedule more field trips out of the hospital. Tomorrow he is going to church and his Sunday School with Lili and Wyatt which he is looking forward to for sure.
Monday is the hospital Halloween Party then out to his neighborhood for a short bit of actual trick or treating. To say he's excited is an understatement.
Keep him in your prayers and know he is getting the best care in the world. More on that next blog.
ake care all and go hug your kids and/or grandkids everyday and tell them how much you love them!
On Tuesday Willem had a new GJ tubes put in and it was a success. Since that procedure he not thrown up once.
We are truly grateful for this. The ONE tube is in place in his small intestine and through it he is getting his nourishment and meds continuously and consistently. This is critical to his improvement. The other tube is in his stomach area near his duodenum (if not in his duodenum). Through it he is getting the medicine that will hopefully shrink the stricture cased by the HLH. The doctors are watching this closely and will do so for about a week and then do another "contrast" study to see if it has improved at all. At this point he is unable to eat any "real" food until this stricture opens. Will keep you posted on this critical issue.
Since the procedure he is walking a lot more, school work has picked up, and he was able to go a field trip to Party City and buy weapons of mass destruction for his "Scream" Halloween costume, and go home for a couple of hours after that on Friday. This tired him out, but he had a great time. He slept the whole way back to the hospital.
Although Willem is improving he has a long way to go until he is out of the woods and out of the hospital. He will not be going home anytime soon, but the docs have given us permission to schedule more field trips out of the hospital. Tomorrow he is going to church and his Sunday School with Lili and Wyatt which he is looking forward to for sure.
Monday is the hospital Halloween Party then out to his neighborhood for a short bit of actual trick or treating. To say he's excited is an understatement.
Keep him in your prayers and know he is getting the best care in the world. More on that next blog.
ake care all and go hug your kids and/or grandkids everyday and tell them how much you love them!
Tuesday, October 25, 2011
Wanted- New Guts!
When we last left Willem he had had his NJ tube removed and his new GJ "button/tube" surgically placed with tubes fed into his intestine and stomach. Well, he started to vomit with greater regularity on Saturday and did so throughout the weekend. He also told staff that the button bothered him with a "stinging type pain". Yesterday they did an upper GI test with greater contrast and found that the tube into the intestine had in fact come unraveled and was in the stomach and that the stomach tube was clogged. No wonder he was in great discomfort and his body was letting him know about it.
Today under light sedation they will remedy both of these problems and hopefully we can move forward. He has been having his stomach "drained" intermittently by suction as well. When last visited last night at 7:00 pm he was sleeping comfortably. His procedure is at 2:30 today and without complication should be done in 1/2 an hour or so.
During this time of extreme discomfort his walking has almost stopped, school work the same, and he was depressed over the weekend. This was a point of concern on Sat and early Sunday. When visited Sunday evening he could not stop talking and did not want me to leave at 8:30 pm. He fell asleep shortly after that, which is a good thing because my bedtime is 9:00!
Willem is the most courageous person I have ever known.(in fact one of his nurses in ICU said just that when he moved out of ICU and she has been an ICU nurse for many years- Her comment "Willem is the strongest kid I have ever seen in ICU") He has endured more stuff than any 10 year old ever should have to. He has done so for the most part without complaint and with acceptance. His depression over the weekend is understandable. He is sick and tired of being sick and tired, we all would be at this point. This whole thing started on July 30 with "achy" muscles and here it is October 25! You are my hero Willem.
We have seen incredible progress in and toward recovery for sure. Hopefully this latest snag can be remedied today and we can continue on our path to getting him home. We seek and need normalcy as any of you reading this can understand.
To that end he is going to go to Sunday school this week, go trick or treating as "Scream", and go to the Halloween store we did not get to last Friday. Keep him in your prayers- powerful and needed.
Today under light sedation they will remedy both of these problems and hopefully we can move forward. He has been having his stomach "drained" intermittently by suction as well. When last visited last night at 7:00 pm he was sleeping comfortably. His procedure is at 2:30 today and without complication should be done in 1/2 an hour or so.
During this time of extreme discomfort his walking has almost stopped, school work the same, and he was depressed over the weekend. This was a point of concern on Sat and early Sunday. When visited Sunday evening he could not stop talking and did not want me to leave at 8:30 pm. He fell asleep shortly after that, which is a good thing because my bedtime is 9:00!
Willem is the most courageous person I have ever known.(in fact one of his nurses in ICU said just that when he moved out of ICU and she has been an ICU nurse for many years- Her comment "Willem is the strongest kid I have ever seen in ICU") He has endured more stuff than any 10 year old ever should have to. He has done so for the most part without complaint and with acceptance. His depression over the weekend is understandable. He is sick and tired of being sick and tired, we all would be at this point. This whole thing started on July 30 with "achy" muscles and here it is October 25! You are my hero Willem.
We have seen incredible progress in and toward recovery for sure. Hopefully this latest snag can be remedied today and we can continue on our path to getting him home. We seek and need normalcy as any of you reading this can understand.
To that end he is going to go to Sunday school this week, go trick or treating as "Scream", and go to the Halloween store we did not get to last Friday. Keep him in your prayers- powerful and needed.
Thursday, October 20, 2011
Latest and Greatest Updateii
Up until Weds our main goal was to get food into Willem and have him keep it down. Some days were/are better than others.
During this time he kept up with his school work, spent time on the 11th Floor in the playroom, walked his laps, had a slight meltdown on Monday, had chemo on Monday, etc. On Monday he also asked me to find a man with a screwdriver. I asked him why and he said, "so he can come and fix me". Well, I found a screw drive and he put it on his "sore spots" and did a couple of turns and he in fact felt better. The power of the mind in healing continues to amaze me. It is powerful and something I have been talking to him a lot about. He is starting to get it, that he and his attitude are major contributors to his healing. Pretty heady stuff for a 10 year old, and he understands it and is trying.
Yesterday he had his NJ (nasal) tube removed and a GL (gastro) tube installed on his left side by his stomach. This is a full on operation and he was a bit anxious about it, but between family and staff we were able to explain and calm him down. He just wants to "get fixed". The operation was a total success.
He will get his meds and food through this "button" that opens and shuts and staff or family simple connect into it and off we go. He has been throwing up sometimes when he gets his meds because he feels the sensation and it made him gag. This will be a thing of the past With no NJ tube he will have a clear real food passage as well.
Per the doc our number one goal is to get calories into him. To that end Willem is going to "graze" all day on small amounts of soft food to keep his intestines, gall bladder, etc. functioning and exercised.
We are very hopeful with this new process that he can put some weight on and get stronger. He came in at 80 lb., was down to 60 lb., and is now around 63 or so.
The best news of yesterday concerns his bone marrow. It is almost completely normal and void of the HLH. There are still some active "histeos" in there, but staff feels with continued treatment these last few will be eradicated soon. Five weeks ago this was not the case. So- he IS GETTING BETTER-the tests prove it.. We can think of no better news, except of course the words, "Willem can go home" which is now on the horizon for sure.
Tomorrow he goes to school for pictures in the morning, (without an NJ tube!), will visit his classroom, and then we are going to the Halloween party for for weapons for his "Scream" costume that he was wearing around the hospital on Tuesday!
Signing off- Keep praying and go hug your kid, grand kid, loved one. As John Lennon said years ago, "All we need is Love". It too is powerful. Take Care all
During this time he kept up with his school work, spent time on the 11th Floor in the playroom, walked his laps, had a slight meltdown on Monday, had chemo on Monday, etc. On Monday he also asked me to find a man with a screwdriver. I asked him why and he said, "so he can come and fix me". Well, I found a screw drive and he put it on his "sore spots" and did a couple of turns and he in fact felt better. The power of the mind in healing continues to amaze me. It is powerful and something I have been talking to him a lot about. He is starting to get it, that he and his attitude are major contributors to his healing. Pretty heady stuff for a 10 year old, and he understands it and is trying.
Yesterday he had his NJ (nasal) tube removed and a GL (gastro) tube installed on his left side by his stomach. This is a full on operation and he was a bit anxious about it, but between family and staff we were able to explain and calm him down. He just wants to "get fixed". The operation was a total success.
He will get his meds and food through this "button" that opens and shuts and staff or family simple connect into it and off we go. He has been throwing up sometimes when he gets his meds because he feels the sensation and it made him gag. This will be a thing of the past With no NJ tube he will have a clear real food passage as well.
Per the doc our number one goal is to get calories into him. To that end Willem is going to "graze" all day on small amounts of soft food to keep his intestines, gall bladder, etc. functioning and exercised.
We are very hopeful with this new process that he can put some weight on and get stronger. He came in at 80 lb., was down to 60 lb., and is now around 63 or so.
The best news of yesterday concerns his bone marrow. It is almost completely normal and void of the HLH. There are still some active "histeos" in there, but staff feels with continued treatment these last few will be eradicated soon. Five weeks ago this was not the case. So- he IS GETTING BETTER-the tests prove it.. We can think of no better news, except of course the words, "Willem can go home" which is now on the horizon for sure.
Tomorrow he goes to school for pictures in the morning, (without an NJ tube!), will visit his classroom, and then we are going to the Halloween party for for weapons for his "Scream" costume that he was wearing around the hospital on Tuesday!
Signing off- Keep praying and go hug your kid, grand kid, loved one. As John Lennon said years ago, "All we need is Love". It too is powerful. Take Care all
Saturday, October 15, 2011
Willem- Still in the hospital, But.....
Since last we left our hero he had been to Art Prize. The next day he was allowed out and spent a few hours at his grandparents with the kids from across the street visiting. It was a very nice relaxed time. He worked on a massive Lego project and enjoyed himself. Then he was able to go home to his own house for a few hours and that was the best. As you can see this is all good.
School work has been good, reading, writing, arithmetic! He is staying up with the teacher's assignments.
Medically:
Thursday he had another upper GI procedure (barium)
Friday he had another gastro emptying procedure to test his motility (Speed and amount of food that passes through his system). He ate another English muffin with "nuclear eggs" and they take pictures every 15 minutes for a total of 7 shots. In the first test his "score" was 3%- this test 33%. I We got this news late last night and will get full explanation today. I was able to watch the progress on a monitor and even I could see the improvement.
He had 2 places in his small intestine that were "constricted". One of those 2 has completely healed. The other is the problem spot and we will get more info today.
His spirits are good. During the test on yesterday his stomach area started to hurt.cramp. It was because his gall bladdr and intestine has not sen that much food for a long time and when they went into action it hurt him. He has to learn how to process food again. His comment was "Stupid stomach-I hate mu tummy".
More later- Take care all and keep the faith
School work has been good, reading, writing, arithmetic! He is staying up with the teacher's assignments.
Medically:
Thursday he had another upper GI procedure (barium)
Friday he had another gastro emptying procedure to test his motility (Speed and amount of food that passes through his system). He ate another English muffin with "nuclear eggs" and they take pictures every 15 minutes for a total of 7 shots. In the first test his "score" was 3%- this test 33%. I We got this news late last night and will get full explanation today. I was able to watch the progress on a monitor and even I could see the improvement.
He had 2 places in his small intestine that were "constricted". One of those 2 has completely healed. The other is the problem spot and we will get more info today.
His spirits are good. During the test on yesterday his stomach area started to hurt.cramp. It was because his gall bladdr and intestine has not sen that much food for a long time and when they went into action it hurt him. He has to learn how to process food again. His comment was "Stupid stomach-I hate mu tummy".
More later- Take care all and keep the faith
Sunday, October 9, 2011
Field Trip and More
Yesterday Willem was allowed to leave the hospital and visit Art Prize which is a city wide art project with over 1500 artists from around the world displaying every type of art imaginable Check it out on line artprize.org.
It was a total surprise to him as a couple of days before he had asked "M", his beloved grandmother, if he was going to be able to go see it. We told him probably not and he responded, then please take a lot of pictures. We did him one better!
It was a sunny and hot day (80 degrees) and off we went. There were thousands of people roaming all over downtown GR and this caused him some concern. After being in a very confined well defined environment for two months and suddenly being outside with all these people, it was a bit overwhelming. He was a trooper as usual and we saw a number of the highlights and took lots of pictures. His mom, brother, and sister all went as well. The most frustrating thing for Willem was the smell of street food vendors on almost every corner. We have been very careful not to eat or drink in front of him in the room, but the real world is just that. He smelled hot dogs, pizza, etc. and wanted some of all of it. After two hours we were back in the room. It was a great outing and hopefully the beginning of more to come!
He threw up his NJ tube again on Friday night, but it was replaced within the hour so we did not lose any ground on his reintroduction to food. He is now getting 14 ml/hour of broken down formula (Similac in the amino acid state), 15 ml/hour water ( Try it-it's not much), and the last couple of days he has been getting one of his pill meds with apple sauce (the treat of the day). Yesterday he was given the ok to have four (4) small containers of applesauce or pudding (his choice is applesauce). So far so good. It is times like this when we realize this is not in our hands and we have to practice acceptance and patience. both easier said than done as most of you know.
He is now being given a new steroid to hopefully shrink the swelling in his gut area. The major problems he has is the stomach is not emptying into the small intestine and the first 20 cm of the small intestine are inflamed and in a couple of spots very constricted which means he eats then it sits in the stomach and eventually come back up. We feel we are on a good path at this point and it will be Weds. or Thursday before we are able to see any progress. This repair is critical so we can continue his trip back into the world of whole food, which means nourishment and self sufficiency.
A quick word about the staff at Helen DeVos Chldrens Hospital- Awesome, kind, attentive, communicative, available, involved, caring... the list could go on. Thank you to the DeVos Family for caring for kids!
Take Care and please keep the prayers and thoughts heading our way- it is appreciated.
It was a total surprise to him as a couple of days before he had asked "M", his beloved grandmother, if he was going to be able to go see it. We told him probably not and he responded, then please take a lot of pictures. We did him one better!
It was a sunny and hot day (80 degrees) and off we went. There were thousands of people roaming all over downtown GR and this caused him some concern. After being in a very confined well defined environment for two months and suddenly being outside with all these people, it was a bit overwhelming. He was a trooper as usual and we saw a number of the highlights and took lots of pictures. His mom, brother, and sister all went as well. The most frustrating thing for Willem was the smell of street food vendors on almost every corner. We have been very careful not to eat or drink in front of him in the room, but the real world is just that. He smelled hot dogs, pizza, etc. and wanted some of all of it. After two hours we were back in the room. It was a great outing and hopefully the beginning of more to come!
He threw up his NJ tube again on Friday night, but it was replaced within the hour so we did not lose any ground on his reintroduction to food. He is now getting 14 ml/hour of broken down formula (Similac in the amino acid state), 15 ml/hour water ( Try it-it's not much), and the last couple of days he has been getting one of his pill meds with apple sauce (the treat of the day). Yesterday he was given the ok to have four (4) small containers of applesauce or pudding (his choice is applesauce). So far so good. It is times like this when we realize this is not in our hands and we have to practice acceptance and patience. both easier said than done as most of you know.
He is now being given a new steroid to hopefully shrink the swelling in his gut area. The major problems he has is the stomach is not emptying into the small intestine and the first 20 cm of the small intestine are inflamed and in a couple of spots very constricted which means he eats then it sits in the stomach and eventually come back up. We feel we are on a good path at this point and it will be Weds. or Thursday before we are able to see any progress. This repair is critical so we can continue his trip back into the world of whole food, which means nourishment and self sufficiency.
A quick word about the staff at Helen DeVos Chldrens Hospital- Awesome, kind, attentive, communicative, available, involved, caring... the list could go on. Thank you to the DeVos Family for caring for kids!
Take Care and please keep the prayers and thoughts heading our way- it is appreciated.
Thursday, October 6, 2011
Improving
Willem is improving and I want to remind everyone this will be a long and very slow process with peaks and valleys. We are grateful for the improvements for sure.
Tuesday he basically threw up his nose tube and it had to be reinserted which they did under light sedation. Since then there have been no problems and we seem to be going along smoothly. He continues to get his formula 10 ml/hour and his15 ml/hour of water as well as his TPN (vitamins etc.). We want him to get off the TPN which has to happen before they can even think of sending him home.
Yesterday his friend Nick same up and visited him and they were both in high spirits battling each other on their DS's. They figured out how to sync them and off to the games they went. Pretty cool. Kids are amazing and wonderful. Yesterday Willem had math lessons in the morning, read out loud 3 chapters of his book in the afternoon, we went outside to the hospital outside game area, had Nick come visit- Wow. A full and great day.
He is now taking a new steroid, in addition to the meds (chemo, other steroids, etc.) he is already taking. This new drug is designed to be be absorbed only by the stomach, small intestine, and colon (large intestine). The walls of these organs are swollen and inflammed and causing the blockage. It is the hope of the doctors that this protocol will help lesson the inflammation. This steroid is sometimes used in the treatment of Chrone's- which Willem does NOT have). Hopefully it works! It will take a minimum of one (1) week to begin to see any measurable results.
School teacher comes today at 1:30 and after getting "rained out" the last two sessions we are hoping for some quality education time with a professional.
Take care all and keep the positive thoughts and prayers coming! Thank You all.
Tuesday he basically threw up his nose tube and it had to be reinserted which they did under light sedation. Since then there have been no problems and we seem to be going along smoothly. He continues to get his formula 10 ml/hour and his15 ml/hour of water as well as his TPN (vitamins etc.). We want him to get off the TPN which has to happen before they can even think of sending him home.
Yesterday his friend Nick same up and visited him and they were both in high spirits battling each other on their DS's. They figured out how to sync them and off to the games they went. Pretty cool. Kids are amazing and wonderful. Yesterday Willem had math lessons in the morning, read out loud 3 chapters of his book in the afternoon, we went outside to the hospital outside game area, had Nick come visit- Wow. A full and great day.
He is now taking a new steroid, in addition to the meds (chemo, other steroids, etc.) he is already taking. This new drug is designed to be be absorbed only by the stomach, small intestine, and colon (large intestine). The walls of these organs are swollen and inflammed and causing the blockage. It is the hope of the doctors that this protocol will help lesson the inflammation. This steroid is sometimes used in the treatment of Chrone's- which Willem does NOT have). Hopefully it works! It will take a minimum of one (1) week to begin to see any measurable results.
School teacher comes today at 1:30 and after getting "rained out" the last two sessions we are hoping for some quality education time with a professional.
Take care all and keep the positive thoughts and prayers coming! Thank You all.
Tuesday, October 4, 2011
Back in the Saddle Again
Sorry for the lack of posts. Password confusion on my part
When last we left on Friday motility test results:
W has blockage where the stomach and small intestine meet, thus he would eat and throw up as very little was being passed through.
Next procedure was an upper GI. Barium etc and they follow that through his system. From that found out the first 20 cm of his small intestine is smaller than what it should be with a couple of places being very constricted. Not sure what is causing this: HLH still present, scar tissue from it having been there, ???. Result- they put in an NJ tube(nose tube) and snaked it into his small intestine so he could be fed formula and get human nourishment. This seems to be working. He did throw up yesterday after he woke up with a temp. Of 102, but it was not much and just bile. They ordered a CT scan for 3:00 yesterday and we await the results. With all the pictures the doc's will compare all and see what's up at this point. That's about it medically
Saturday was the best day he has had since the start of his illness. He was up, engaged, talking a lot, did laps 3 times, and was a close to our Willem as we have seen. He was playing his DS game and had cartoons on when I asked if I could switch the channel and check on the Michigan game score (it was 37-0)and he told me the TV was really cool and all I had to do was "tell it what channel I wanted and it would change", so I turned and said 65 and of course nothing happened. I turned to see him laughing his head off " I tricked you Ba". It was a great day.
Sunday when we got there around noon it was more of the same, only he was even more talkative. Our neighbors, the Rays, came down as well with their kids and Willem showed them all around, did a couple more laps showing them the heli pad where we say a helicopter take off on Friday and we were all in the play room having a ball. It was a good day as well. Thence woke up yesterday with the for mentioned fever etc.
That's where he is for now.
Daily We are grateful for all that has happened and is happening. We all can handle adversity by "fixing it" which will not work here, accept and deal with it, OR embrace it and grow from it. We have chosen the latter and realize this is all out of our hands. Willlem's courage and acceptance of his situation has been nothing short of Amazing. He hates the tube in his nose, but now accepts that it is part of his recovery. (he previously pulled it out two times when he was in ICU). He has asked for a pepperoni pizza and a 10 piece McNuggets meal (because he is 10 years old). His level of acceptance is something we all can learn from and emulate.
We are all writing a daily list of things we are grateful for and appreciative of everyday. It has been proven, very strongly, that people who do this daily have a more positive view of the world, are better equipped to handle the daily challenges we all have, and are more satisfied. I challenge you all to do this for 30 days-write them down- and see what happens. I then challenge you all to continue to do so after the 39 days, and "why stop at 5"?
Thanks to you for your support. Willem and the family know you are there and this is very comforting, Take Care
When last we left on Friday motility test results:
W has blockage where the stomach and small intestine meet, thus he would eat and throw up as very little was being passed through.
Next procedure was an upper GI. Barium etc and they follow that through his system. From that found out the first 20 cm of his small intestine is smaller than what it should be with a couple of places being very constricted. Not sure what is causing this: HLH still present, scar tissue from it having been there, ???. Result- they put in an NJ tube(nose tube) and snaked it into his small intestine so he could be fed formula and get human nourishment. This seems to be working. He did throw up yesterday after he woke up with a temp. Of 102, but it was not much and just bile. They ordered a CT scan for 3:00 yesterday and we await the results. With all the pictures the doc's will compare all and see what's up at this point. That's about it medically
Saturday was the best day he has had since the start of his illness. He was up, engaged, talking a lot, did laps 3 times, and was a close to our Willem as we have seen. He was playing his DS game and had cartoons on when I asked if I could switch the channel and check on the Michigan game score (it was 37-0)and he told me the TV was really cool and all I had to do was "tell it what channel I wanted and it would change", so I turned and said 65 and of course nothing happened. I turned to see him laughing his head off " I tricked you Ba". It was a great day.
Sunday when we got there around noon it was more of the same, only he was even more talkative. Our neighbors, the Rays, came down as well with their kids and Willem showed them all around, did a couple more laps showing them the heli pad where we say a helicopter take off on Friday and we were all in the play room having a ball. It was a good day as well. Thence woke up yesterday with the for mentioned fever etc.
That's where he is for now.
Daily We are grateful for all that has happened and is happening. We all can handle adversity by "fixing it" which will not work here, accept and deal with it, OR embrace it and grow from it. We have chosen the latter and realize this is all out of our hands. Willlem's courage and acceptance of his situation has been nothing short of Amazing. He hates the tube in his nose, but now accepts that it is part of his recovery. (he previously pulled it out two times when he was in ICU). He has asked for a pepperoni pizza and a 10 piece McNuggets meal (because he is 10 years old). His level of acceptance is something we all can learn from and emulate.
We are all writing a daily list of things we are grateful for and appreciative of everyday. It has been proven, very strongly, that people who do this daily have a more positive view of the world, are better equipped to handle the daily challenges we all have, and are more satisfied. I challenge you all to do this for 30 days-write them down- and see what happens. I then challenge you all to continue to do so after the 39 days, and "why stop at 5"?
Thanks to you for your support. Willem and the family know you are there and this is very comforting, Take Care
Friday, September 30, 2011
Up and Down We Go
Yesterday he had the motility test and we will find out this morning what is going on. The test was exhausting for him, as he had to get out of the chair in the nuclear medicine room 7 times and get up on the X Ray machine "gurney" and be slid into the machine (like and MRI tube-his head did not go in thankfully), then have a 1 minute picture taken and then off and back onto the chair. Even with help (fortunately they allowed me to be right there for the entire procedure)- each time got a little more difficult. When the third time came around he had a mini meltdown- "I just want to go back to my room and have Gatorade" and a little cry. We worked our way through this (bribery is a great motivator, expensive for grandpa, but useful and necessary) and the rest of the procedure went well. We had the movie "Despicable Me on the whole time (which I now know by heart) and this helped focus his attention away from the task of the procedure. Good idea DeVos team!
Back in his room we ordered a grilled cheese sandwich (they make great gc sandwiches here) , he drank some Gatorade with his meds, and tried to go to sleep. Unfortunately it all came back up shortly after that and he did go to sleep.Never did eat the sandwich. He rested most of the rest of the day.
Susan showed up at 1:30 for his school lesson and he was too tired to rally. This gave us a good opportunity to talk about about where we are on his education trail, how I can fill in and daily keep him engaged, what to concentrate on, etc. A good and needed session. Thanks for your flexibility and generosity Susan.
Thursday proves that we are not on our time. We, Willem's support team, can plan all the events, classes, etc., but his health, which is not in any of Our hands whatsoever but in His, dictates what and when we will be doing what and when we can. If that makes sense it will be a miracle. Hopefully you get it.
I will do a short update form the hospital if I find out results this morning and if I can figure out how to do it on my new IPhone. (It's a little scary to have a Smart phone that smarter than me!)
Take care all and your thoughts and prayers are needed, appreciated, and felt. Keep it up- It is going to be a roller coaster ride through his recovery, key word Recovery!
Back in his room we ordered a grilled cheese sandwich (they make great gc sandwiches here) , he drank some Gatorade with his meds, and tried to go to sleep. Unfortunately it all came back up shortly after that and he did go to sleep.Never did eat the sandwich. He rested most of the rest of the day.
Susan showed up at 1:30 for his school lesson and he was too tired to rally. This gave us a good opportunity to talk about about where we are on his education trail, how I can fill in and daily keep him engaged, what to concentrate on, etc. A good and needed session. Thanks for your flexibility and generosity Susan.
Thursday proves that we are not on our time. We, Willem's support team, can plan all the events, classes, etc., but his health, which is not in any of Our hands whatsoever but in His, dictates what and when we will be doing what and when we can. If that makes sense it will be a miracle. Hopefully you get it.
I will do a short update form the hospital if I find out results this morning and if I can figure out how to do it on my new IPhone. (It's a little scary to have a Smart phone that smarter than me!)
Take care all and your thoughts and prayers are needed, appreciated, and felt. Keep it up- It is going to be a roller coaster ride through his recovery, key word Recovery!
Wednesday, September 28, 2011
What A Difference a Day Makes
For Tuesday 9/28 and Weds 9/29
Night and day difference in appearance, attitude, and general well being on Tuesday and this morning as well.
Tuesday- He had PT in the morning, was putting together a Bionical on his own while sitting in the chair when I walked in, then he read for awhile and took a little rest. Susan Meltzer from Meadowbrook Elem. came and met Sarah the hospital teacher. They are working closely together. She then spent about an hour with Willem. All is well on the education front.
Willem's appetite has returned pretty much full on. The problem is keeping it down. Feeding is supposed to be done very slowly and controlled. Some how he keeps finding ways to get more food more quickly than he can handle and up it comes as well as just keeping it down when he does eat slowly Last night about 8:30 the gastro doc. was in and felt his stomach, intestines, liver, and kidneys and said they were soft which is a good thing. . There is definitely a problem here that the doctors are watching. Tomorrow, Thursday, he is going to have a Motility test. He will eating some radioactive pellets, then have pictures taken as they work their way through his digestive system. They will take pictures every 15 minutes for 90 minutes.
Hopefully this will show them what is happening where. I will report the findings tomorrow.
Today, Weds., was another good attitude day and he read, did some Bionical work, and we talked. He is such a polite little boy and the staff love him because he is so sweet. He is getting the best care possible for sure. These are some dedicated people for sure. Thank you all! We can not say that enough. We are daily grateful. See you all tomorrow!
Night and day difference in appearance, attitude, and general well being on Tuesday and this morning as well.
Tuesday- He had PT in the morning, was putting together a Bionical on his own while sitting in the chair when I walked in, then he read for awhile and took a little rest. Susan Meltzer from Meadowbrook Elem. came and met Sarah the hospital teacher. They are working closely together. She then spent about an hour with Willem. All is well on the education front.
Willem's appetite has returned pretty much full on. The problem is keeping it down. Feeding is supposed to be done very slowly and controlled. Some how he keeps finding ways to get more food more quickly than he can handle and up it comes as well as just keeping it down when he does eat slowly Last night about 8:30 the gastro doc. was in and felt his stomach, intestines, liver, and kidneys and said they were soft which is a good thing. . There is definitely a problem here that the doctors are watching. Tomorrow, Thursday, he is going to have a Motility test. He will eating some radioactive pellets, then have pictures taken as they work their way through his digestive system. They will take pictures every 15 minutes for 90 minutes.
Hopefully this will show them what is happening where. I will report the findings tomorrow.
Today, Weds., was another good attitude day and he read, did some Bionical work, and we talked. He is such a polite little boy and the staff love him because he is so sweet. He is getting the best care possible for sure. These are some dedicated people for sure. Thank you all! We can not say that enough. We are daily grateful. See you all tomorrow!
Tuesday, September 27, 2011
Grouchy, Grumpy, Wimpy
We all have those days and Willem had one yesterday. This does not mean progress was not made. It was.
He slept until 9:30 when the nurses woke him to do their thing (vitals, meds, etc)
Breakfast was 2 pieces of bacon, a piece of Fench toast, Gatorade, and a little Vital Jr. This was given to him VERY slowly and it worked. He is not allowed any soda pop of any kind and no milk- Gatorade (which he likes a lot), and water only and this is also given to him slowly.
He then went to PT for a session there. He played a little basketball, walked, and "jumped on the big ball".
Sarah Smith the hospital teacher came in the spent an hour with him for his first official education session. They read, drew, and worked on some math. Willem got very frustrated because he was trying to add 2 disit numbers and was doing it diagonally as opposed to vertically. Sarah gentle showed him what was a better way than diagonally and he got frustrated and upset. They worked through that and the session ended.
Lunch came it was a chicken sandwich- NOT grilled cheese. He had a little melt down and was very upset. While he waited for the grilled cheese (the dietary staff have most accommodating and helpful with our requests-Thank You), he ate a littler of the chicken and one slice of the bread. He ate the whole gc sandwich and his tomato soup. He then fell asleep and was sleeping at 3:00 when I arrived. We got him out of bed and to the chair which is good for him. He was unhappy with it. but we won this battle. He thought he was going to throw up while he was moving, but we did some deep breathing and he did not. He fell asleep.
Mom, the kids, and grandma showed up and he pretty much slept through their entire stay. Mary had brought him a Little Caeser's pizza he had requested and he did not eat-just slept in his bed. They left around 7:00.
He received his weekly chemo at midnight through his port so we will see what the day brings.
Today is another education day with Susan Meltzer from Meadowbrook Elem coming at 1:30. She and Sarah will be working closely together to get Willem up to 4th grade speed. Willem is a bright young boy and Sarah thinks it will not be aproblem "keeping him up with the other kids"
Significant yesterday- He moved, he thought, he ate, he DID NOT vomit! This is a good day even if he didn't enjoy it. (sorry this ended up here-I hit something and it moved on me and I can't move it back)
Medically- all numbers continue to track positive. It is just going to be a long slow process to recovery. The good thing here is we are talking recovery!
Thanks to all for thoughts and prayers- he needs them all.
He slept until 9:30 when the nurses woke him to do their thing (vitals, meds, etc)
Breakfast was 2 pieces of bacon, a piece of Fench toast, Gatorade, and a little Vital Jr. This was given to him VERY slowly and it worked. He is not allowed any soda pop of any kind and no milk- Gatorade (which he likes a lot), and water only and this is also given to him slowly.
He then went to PT for a session there. He played a little basketball, walked, and "jumped on the big ball".
Sarah Smith the hospital teacher came in the spent an hour with him for his first official education session. They read, drew, and worked on some math. Willem got very frustrated because he was trying to add 2 disit numbers and was doing it diagonally as opposed to vertically. Sarah gentle showed him what was a better way than diagonally and he got frustrated and upset. They worked through that and the session ended.
Lunch came it was a chicken sandwich- NOT grilled cheese. He had a little melt down and was very upset. While he waited for the grilled cheese (the dietary staff have most accommodating and helpful with our requests-Thank You), he ate a littler of the chicken and one slice of the bread. He ate the whole gc sandwich and his tomato soup. He then fell asleep and was sleeping at 3:00 when I arrived. We got him out of bed and to the chair which is good for him. He was unhappy with it. but we won this battle. He thought he was going to throw up while he was moving, but we did some deep breathing and he did not. He fell asleep.
Mom, the kids, and grandma showed up and he pretty much slept through their entire stay. Mary had brought him a Little Caeser's pizza he had requested and he did not eat-just slept in his bed. They left around 7:00.
He received his weekly chemo at midnight through his port so we will see what the day brings.
Today is another education day with Susan Meltzer from Meadowbrook Elem coming at 1:30. She and Sarah will be working closely together to get Willem up to 4th grade speed. Willem is a bright young boy and Sarah thinks it will not be aproblem "keeping him up with the other kids"
Significant yesterday- He moved, he thought, he ate, he DID NOT vomit! This is a good day even if he didn't enjoy it. (sorry this ended up here-I hit something and it moved on me and I can't move it back)
Medically- all numbers continue to track positive. It is just going to be a long slow process to recovery. The good thing here is we are talking recovery!
Thanks to all for thoughts and prayers- he needs them all.
Monday, September 26, 2011
Eating, Walking, Talking, Laughing, Throwing Up
Good Morning to All
All of the above continue to happen. The last one, believe it or not, is not a huge concern of the doctors. They know the HLH is still in his system and has upset his digestion in the intestines. If it continues, they will do another scope later this week.
Yesterday at noon he ate a grilled cheese sandwich and tomato soup (his "regular" now), then a couple of bite size Oreos,; then for dinner he had pizza, a piece of peach, some Vital Jr., and pop. All this was in his system until 7:00 pm when it came back up (I find it interesting it happened about 20 minutes after I left and it did not happen when Mary was there from noon until 3:00. Things that make you go mm........
I have to go on Wyatt's field trip to Art Prize. More later this afternoon.
I have an interesting story about Rich DeVos that happened at our church Sunday.
Your support is daily appreciated. We are grateful beyond all measure. Thank You
All of the above continue to happen. The last one, believe it or not, is not a huge concern of the doctors. They know the HLH is still in his system and has upset his digestion in the intestines. If it continues, they will do another scope later this week.
Yesterday at noon he ate a grilled cheese sandwich and tomato soup (his "regular" now), then a couple of bite size Oreos,; then for dinner he had pizza, a piece of peach, some Vital Jr., and pop. All this was in his system until 7:00 pm when it came back up (I find it interesting it happened about 20 minutes after I left and it did not happen when Mary was there from noon until 3:00. Things that make you go mm........
I have to go on Wyatt's field trip to Art Prize. More later this afternoon.
I have an interesting story about Rich DeVos that happened at our church Sunday.
Your support is daily appreciated. We are grateful beyond all measure. Thank You
Saturday, September 24, 2011
Incredible Support Team
Willem update first:
Friday 9/23-
When I arrive around 11:15 Erin was there and so were a few crumbs left from a Subway sandwich.
The three of us went for a couple of laps around the 9th floor and Willem was encouraged by different staff we encountered all the way around. He then played a bit in the playroom and lunch arrive- PIZZA and chocolate cake!
He ate it too quickly or perhaps it did not agree with him and it came back up. So, this means small pieces of food will be given to him for all meals and that he still has some recovery yet. The fact that he is hungry is the good thing to take from this.
Last night we attended a spaghetti dinner at Trinity CRC church in Grandville. Great food, great fellowship, great turnout. Thanks to all who came AND to the awesome folks who organized, contributed to (I ate way too much cake and "mud pies"), and worked the event. Our hearts are filled with gratitude.
Erin, Tom, Mary, and I ate totally blown away and appreciative of the support, love, and willingness of others to help. It truly is a blessing and we humbled. Thank you is not enough.
I will share the names of all who rolled up their sleeves for the event later today. Greg, who works with Tom at the hotel was the main organizer-Huge thanks to you and your family- wife, sister, Mom, and .... (Greg or somebody in the family- please send me names of family and friends who helped etc). I would like to apologize to you all for not mentioning the dinner in the blog the last couple of days- I blew the opportunity to publicize the event-Sorry. It did very well anyway for sure.
The support team at Meadowbrook is in full swing- thanks to Mrs. Overway (Wyatt's 2nd grade teacher), Mrs. Kemperman (Willem's 4th grade teacher), Mrs Lorimer (school counselor) and husband for all showing up as well as and any others I missed. You are incredible in your support, interest, and giving of your time, heart, and energy.
I spoke with Sarah Smith for the hospital (she is the education liaison/coordinator person there). She told me it is very rare indeed for a school to send a teacher to the hospital to teach! Mrs. Meltzer and all the rest of you, including Principal Tim Shaw- thank you.
Enjoy your weekend- Go Blue! (I did that because I can!)
Friday 9/23-
When I arrive around 11:15 Erin was there and so were a few crumbs left from a Subway sandwich.
The three of us went for a couple of laps around the 9th floor and Willem was encouraged by different staff we encountered all the way around. He then played a bit in the playroom and lunch arrive- PIZZA and chocolate cake!
He ate it too quickly or perhaps it did not agree with him and it came back up. So, this means small pieces of food will be given to him for all meals and that he still has some recovery yet. The fact that he is hungry is the good thing to take from this.
Last night we attended a spaghetti dinner at Trinity CRC church in Grandville. Great food, great fellowship, great turnout. Thanks to all who came AND to the awesome folks who organized, contributed to (I ate way too much cake and "mud pies"), and worked the event. Our hearts are filled with gratitude.
Erin, Tom, Mary, and I ate totally blown away and appreciative of the support, love, and willingness of others to help. It truly is a blessing and we humbled. Thank you is not enough.
I will share the names of all who rolled up their sleeves for the event later today. Greg, who works with Tom at the hotel was the main organizer-Huge thanks to you and your family- wife, sister, Mom, and .... (Greg or somebody in the family- please send me names of family and friends who helped etc). I would like to apologize to you all for not mentioning the dinner in the blog the last couple of days- I blew the opportunity to publicize the event-Sorry. It did very well anyway for sure.
The support team at Meadowbrook is in full swing- thanks to Mrs. Overway (Wyatt's 2nd grade teacher), Mrs. Kemperman (Willem's 4th grade teacher), Mrs Lorimer (school counselor) and husband for all showing up as well as and any others I missed. You are incredible in your support, interest, and giving of your time, heart, and energy.
I spoke with Sarah Smith for the hospital (she is the education liaison/coordinator person there). She told me it is very rare indeed for a school to send a teacher to the hospital to teach! Mrs. Meltzer and all the rest of you, including Principal Tim Shaw- thank you.
Enjoy your weekend- Go Blue! (I did that because I can!)
Thursday, September 22, 2011
And the Good Beat Goes On
Let's start with Weds 9/21:
Four (4) laps around floor 9. Normal gait (heal to toe) - Good stuff
Docs continue to be pleased with his progress. It is a process for sure!
The docs did the procedure to take out Broviac and put in the port(as described on 9/20) All went well and when he woke up in the procedure room, before going back to his room, he opened his eyes and with me staring right at him he said, "Grilled Cheese Sandwich". Because of the procedure he could not eat after midnight and before he went down he had requested a grilled cheese with tomato soup. Upon return, about 40 minutes after waking up, he ate an entire sandwich and I fed him most of the soup. He ate slowly and it stayed down.He then put a Bionical thing together, order spaghetti and meatballs for dinner and fell asleep.
Thursday 9/22-today
Sat in chair, out of bed, for 2.5 hours (new record!)
Went to PT therapy gym and rode a bike. Played in the play room for awhile as well
Ate lunch too quickly and maybe too much and threw it up. He is hungry and just starts grabbing and stuffing his mouth. Lesson learned hopefully him and definitely for us. This is really a good sign as he is hungry, is eating, and is getting stronger. His request at 4:30 was for a "cheese burger
in paradise"- a Jimmy Buffet song the nurses and I were singing to him when we delivered his cheesburger with mustard, ketchup, and American cheese
(we had fun doing it even if he did not fully appreciate it). He was eating this as I left for Wyatt's soccer practice.
Willem is slowly being returned to us as his real personality (not drug induced) begins to re emerge. He is now back to being the very polite boy he is, smiling more everyday, and daily more alert and with it.
Hospital school starts for him next Tuesday- He is ready for sure. He wants to see his friends at school, Cub Scouts, and soccer. This is all good.
I want all to know Erin is the glue holding the family together and the glue is very strong. It is a daily challenge. but she is up to the task.Some days are better than others of course, but for now we are all doing our thing and watching the miracle of recovery. We are buoyed by this miracle and what a joy it is to behold!
We still have a long way to go so please keep Willem in your thoughts and most importantly your prayers-Thank and Take Care Go HUG YOUR CHILD!.
Four (4) laps around floor 9. Normal gait (heal to toe) - Good stuff
Docs continue to be pleased with his progress. It is a process for sure!
The docs did the procedure to take out Broviac and put in the port(as described on 9/20) All went well and when he woke up in the procedure room, before going back to his room, he opened his eyes and with me staring right at him he said, "Grilled Cheese Sandwich". Because of the procedure he could not eat after midnight and before he went down he had requested a grilled cheese with tomato soup. Upon return, about 40 minutes after waking up, he ate an entire sandwich and I fed him most of the soup. He ate slowly and it stayed down.He then put a Bionical thing together, order spaghetti and meatballs for dinner and fell asleep.
Thursday 9/22-today
Sat in chair, out of bed, for 2.5 hours (new record!)
Went to PT therapy gym and rode a bike. Played in the play room for awhile as well
Ate lunch too quickly and maybe too much and threw it up. He is hungry and just starts grabbing and stuffing his mouth. Lesson learned hopefully him and definitely for us. This is really a good sign as he is hungry, is eating, and is getting stronger. His request at 4:30 was for a "cheese burger
in paradise"- a Jimmy Buffet song the nurses and I were singing to him when we delivered his cheesburger with mustard, ketchup, and American cheese
(we had fun doing it even if he did not fully appreciate it). He was eating this as I left for Wyatt's soccer practice.
Willem is slowly being returned to us as his real personality (not drug induced) begins to re emerge. He is now back to being the very polite boy he is, smiling more everyday, and daily more alert and with it.
Hospital school starts for him next Tuesday- He is ready for sure. He wants to see his friends at school, Cub Scouts, and soccer. This is all good.
I want all to know Erin is the glue holding the family together and the glue is very strong. It is a daily challenge. but she is up to the task.Some days are better than others of course, but for now we are all doing our thing and watching the miracle of recovery. We are buoyed by this miracle and what a joy it is to behold!
We still have a long way to go so please keep Willem in your thoughts and most importantly your prayers-Thank and Take Care Go HUG YOUR CHILD!.
Tuesday, September 20, 2011
Another Good Day
Today Willem walked, ate 2 chicken McNuggets and some fries (I know and we don't care-he's eating- the asparagus can wait!), another 1/4 of the formentioned famous Subway sandwich, slept (post Chemo day), and while doing all that his numbers continue to track upward and positive. We are greatly encouraged as is Dr. C.
Good talk with Dr. Cornelius this morning. He is going to put a port in lieu of the Broviak (sp.?) which he now has, in his chest. The port is more mobile and flexible which is good as Willem moves more. Dr. C is going to lower his morphine and wean Willem off by using methadone, a common process in this sort of situation. The next big move is to take away the IV of "food" he has had for weeks. This process will begin soon. (I do not remember the exact time table- but Dr. C want it done sooner rather than later).
We met with Michelle Lorimer, the counselor at MeadowBrook Elem. (Forest Hills schools) and she gave us a huge banner with tons of signatures of all the fourth graders in his school and then it went to the school ice cream social and lots of other kids and staff signed it. Gifts were given to the family (Erin, Lili, and Wyatt as well as Willem, and gift cards were also presented to the family from the staff. Thank you all at MB Elem- You are awesome.
Speaking of awesome, Susan Meltzer, a third grade part time teacher @ MB has volunteered to come to the hospital twice a week and spend time with Willem to keep him at up to speed as much as possible. She will work closely with Shannon Kemperman, his fourth grade teacher to keep Willem current on his fourth grade curriculum. (Mrs. Kemperman has three kids under the age of 6 and needs to be home after school!) Thank you Mrs Meltzer and Mrs Kemperman for your efforts to date. Willem is excited to begin learning.
What Willem most wants is to get back to school and see and be with his friends. Our goal is work on this to get him to do the things needed to exit the hospital. Eat more everyday, exercise daily to gain strength and coordination (balance), and use his brain through games, sessions with Mrs. Meltzer, reading to him and he reading to us, etc.
The amazing thing is what we are talking about now compared to what we were talking about a couple of weeks ago, or even last week. The process of recovery is almost as surreal as the downward spiral into sickness. The former is a whole lot more fun!
Take Care all and thank you for your daily thoughts and prayers. Please don't stop!
Good talk with Dr. Cornelius this morning. He is going to put a port in lieu of the Broviak (sp.?) which he now has, in his chest. The port is more mobile and flexible which is good as Willem moves more. Dr. C is going to lower his morphine and wean Willem off by using methadone, a common process in this sort of situation. The next big move is to take away the IV of "food" he has had for weeks. This process will begin soon. (I do not remember the exact time table- but Dr. C want it done sooner rather than later).
We met with Michelle Lorimer, the counselor at MeadowBrook Elem. (Forest Hills schools) and she gave us a huge banner with tons of signatures of all the fourth graders in his school and then it went to the school ice cream social and lots of other kids and staff signed it. Gifts were given to the family (Erin, Lili, and Wyatt as well as Willem, and gift cards were also presented to the family from the staff. Thank you all at MB Elem- You are awesome.
Speaking of awesome, Susan Meltzer, a third grade part time teacher @ MB has volunteered to come to the hospital twice a week and spend time with Willem to keep him at up to speed as much as possible. She will work closely with Shannon Kemperman, his fourth grade teacher to keep Willem current on his fourth grade curriculum. (Mrs. Kemperman has three kids under the age of 6 and needs to be home after school!) Thank you Mrs Meltzer and Mrs Kemperman for your efforts to date. Willem is excited to begin learning.
What Willem most wants is to get back to school and see and be with his friends. Our goal is work on this to get him to do the things needed to exit the hospital. Eat more everyday, exercise daily to gain strength and coordination (balance), and use his brain through games, sessions with Mrs. Meltzer, reading to him and he reading to us, etc.
The amazing thing is what we are talking about now compared to what we were talking about a couple of weeks ago, or even last week. The process of recovery is almost as surreal as the downward spiral into sickness. The former is a whole lot more fun!
Take Care all and thank you for your daily thoughts and prayers. Please don't stop!
Monday, September 19, 2011
Willem is improving!
First of all I want to apologize to all for the lapse in my blogging. We are up to speed and ready to go.
I want to congratulate Thomas on the excellent, heartfelt, and loving blogs that only Daddy could write. Great job Tom, you are in our daily prayers as well as Willem. To all of our friends who have been following the blog, Thank You. You truly have made a difference.
I just left the hospital and had a nice conversation with Dr.Cornelius. What a gentle kind man he is, and his level of caring for Willem is deep.
He is very pleased with the direction of recovery. See below for a few specifics. Willem just needs to be eating more on a daily basis, get a little stronger, etc.
I want to thank Susan Meltzer third grade teacher from Meadowbrook Elem. who is going to voluntarily come to Willem's room twice a week and at least keep him somewhat up to speed. I will fill in a little as well. Thank you Susan you are a saint.
Today Willem:
Ate Doritos and drank pop. Evidently he did so a bit too quickly and up it came.
Ordered from "M" a Subway ham, American cheese, regular mustard sandwich on cheese bread. When the delivery guy arrived, Willem was overjoyed -- reaching out and saying, "Subway! Subway!" I cut about a quarter if it out of the middle and he ate it slowly and drank slowly and it all stayed down with little consequence. This is Huge!
As of 4:00 pm he had already walked 3 times, eaten food, been talking, and for the most part feeling good. Wow!
He looks great with normal color which is an improvement over yellow/orange for sure.
His "numbers" have improved and continue to do so daily. Liver is almost back to 100%, kidneys are fine, blood counts where they need to be. All in all he is tracking the recovery highway with good direction. There have been a couple of episodes and there very well could be more as we move forward. We will deal with them as they arise and move forward. The key word here is forward.
As grandparents Mary and I feel blessed to have the opportunity to be involved in all three kids lives- Thank you Erin and Tom. We feel honored and are more than up to being more involved for the next year as well. Together WE can do this. This means all of you as well. Your generosity and kindness has been felt and is appreciated far more than you can comprehend. Thank You All.
I want to congratulate Thomas on the excellent, heartfelt, and loving blogs that only Daddy could write. Great job Tom, you are in our daily prayers as well as Willem. To all of our friends who have been following the blog, Thank You. You truly have made a difference.
I just left the hospital and had a nice conversation with Dr.Cornelius. What a gentle kind man he is, and his level of caring for Willem is deep.
He is very pleased with the direction of recovery. See below for a few specifics. Willem just needs to be eating more on a daily basis, get a little stronger, etc.
I want to thank Susan Meltzer third grade teacher from Meadowbrook Elem. who is going to voluntarily come to Willem's room twice a week and at least keep him somewhat up to speed. I will fill in a little as well. Thank you Susan you are a saint.
Today Willem:
Ate Doritos and drank pop. Evidently he did so a bit too quickly and up it came.
Ordered from "M" a Subway ham, American cheese, regular mustard sandwich on cheese bread. When the delivery guy arrived, Willem was overjoyed -- reaching out and saying, "Subway! Subway!" I cut about a quarter if it out of the middle and he ate it slowly and drank slowly and it all stayed down with little consequence. This is Huge!
As of 4:00 pm he had already walked 3 times, eaten food, been talking, and for the most part feeling good. Wow!
He looks great with normal color which is an improvement over yellow/orange for sure.
His "numbers" have improved and continue to do so daily. Liver is almost back to 100%, kidneys are fine, blood counts where they need to be. All in all he is tracking the recovery highway with good direction. There have been a couple of episodes and there very well could be more as we move forward. We will deal with them as they arise and move forward. The key word here is forward.
As grandparents Mary and I feel blessed to have the opportunity to be involved in all three kids lives- Thank you Erin and Tom. We feel honored and are more than up to being more involved for the next year as well. Together WE can do this. This means all of you as well. Your generosity and kindness has been felt and is appreciated far more than you can comprehend. Thank You All.
Thursday, September 15, 2011
A Very Happy Meal
Evidently Syd is having some trouble posting to the blog and I happen to have some downtime so I will post what I know.
Syd called Erin to tell her that Willem asked for chicken nuggets and french fries so, with the doctor's approval, my mother went to McDonalds and got Willem a happy meal. Willem ate, swallowed, and kept down, some bites of chicken and fries. Happy meal has never been so appropriate a name for that meal. Erin's voice trembled slightly in anticipation of telling me the information.
Syd called Erin to tell her that Willem asked for chicken nuggets and french fries so, with the doctor's approval, my mother went to McDonalds and got Willem a happy meal. Willem ate, swallowed, and kept down, some bites of chicken and fries. Happy meal has never been so appropriate a name for that meal. Erin's voice trembled slightly in anticipation of telling me the information.
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Thank you Mark for your Paypal donation. Our family is very grateful. Thank you.
Wednesday, September 14, 2011
Leaving On A Good Note
There is so much that should be said but I have no more time. All out of time. I had to say goodbye (actually, I said, "see you later." I don't say goodbye) to my son while he lay sleeping. I leave tomorrow and will return very late in 2012. What a horrible feeling this is yet it is no more pain than my comrades are feeling -- we are all feeling pain in our goodbyes to loved ones but pleased to be serving our country and doing what we have been trained for.
Willem is doing very well. He is off his antibiotics because his body is handling the healing on its own. The doctor is happy to send me off on a high note. Willem said that my going away present will be that he would swallow some food and he wanted the tomato soup that the hospital gave him. We sat him up to eat and then he threw up. Blood. he then said that he no longer wanted to eat and we understood. The blood is from his intestine and, evidently, the doctors are not worried at this juncture.
This will be my last post and then Syd will take it from here. Thank you again Syd. I do wish to thank you all again, however, for what started out as a simple means to provide up to date information about Willem. The blog soon became therapy for me and then a banner of hope for my son. Through this blog, I have learned a great deal about myself, my family, community, and humanity. I have learned what great people do to help their friends, family, and strangers. Thank you all again.
Willem is doing very well. He is off his antibiotics because his body is handling the healing on its own. The doctor is happy to send me off on a high note. Willem said that my going away present will be that he would swallow some food and he wanted the tomato soup that the hospital gave him. We sat him up to eat and then he threw up. Blood. he then said that he no longer wanted to eat and we understood. The blood is from his intestine and, evidently, the doctors are not worried at this juncture.
This will be my last post and then Syd will take it from here. Thank you again Syd. I do wish to thank you all again, however, for what started out as a simple means to provide up to date information about Willem. The blog soon became therapy for me and then a banner of hope for my son. Through this blog, I have learned a great deal about myself, my family, community, and humanity. I have learned what great people do to help their friends, family, and strangers. Thank you all again.
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Erin wishes to thank her teammates from work for their very generous donation. I thank you as well. We are grateful.
Thank you auntie Clair and uncle Dennis.
Please note that I have tried to thank everyone as much as possible but if I have forgotten anyone in my thank yous please forgive me and know that you have done a wonderful thing and our lives have been made better from your kindness. We are truly very grateful.
Tuesday, September 13, 2011
TREND
Willem's doctor stopped me as I was leaving the hospital and said that I needed to stay a little longer and to wait for her -- saying that she absolutely had to talk to me. I waited. I waited by Willem's side as he lay asleep and just stared at his beautiful face. He was smiling in his sleep. My precious boy.
The doctor came through the door all smiles and stated that she just had to share all the wonderful news about Willem. I stared at the spread sheet filled with numbers and capital letters and we discussed trends. Now that might not seem so amazing to the reader but one must understand that, last week, we couldn't discuss trends because there was nothing to indicate a trend; good or bad. We now have a trend and that trend is positive. I will leave it at that.
The doctor's words only served to put a period on the end of a sentence that Willem and I previously created together in a matter of minutes: I looked at him; he smiled; I spoke; he said my breath smelled; I asked him why he was so handsome and he replied because mommy is so beautiful. Simple banter that speaks volumes more than a spread sheet full of numbers ever could.
It amazes me to no end the amount of support that our family has received from family, friends, and people we have never met. Thank you all for being part of the team: thank you to those who have taken Lili and Wyatt; thank you to those who have brought food; thank you to those who have taken me to movies to distract me; thank you to those who have offered to help; thank you to those who have sent money; thank you to those who have made me laugh; thank you to the makers of blankets; thank you to the spaghetti dinner benefit organizer; thank you to my teammates at work and to my brothers in arms; thank you to those who made me go for a run and listened to me whine about it; thank you to all of you who prayed or sent happy thoughts. Thank you to that incredible person who left his state and came to me because I said that I needed him.
Speaking of people who always seems to be there when I need them... I was in the kitchen listening to Syd and Erin talk about curriculum night at school and how he plans on handling Willem's education and I just had to smile. I find a great amount of comfort knowing that he, Erin, and my mother are on the job and willing to do what they do so I can do my job over seas without having to worry so much.
A special thank you to Erin who is a pillar of strength and a seemingly endless supply of confidence when I have none. She is my anchor and everything that is wonderful about my life. Thank you Erin for your encouragement and support. I love you.
The doctor came through the door all smiles and stated that she just had to share all the wonderful news about Willem. I stared at the spread sheet filled with numbers and capital letters and we discussed trends. Now that might not seem so amazing to the reader but one must understand that, last week, we couldn't discuss trends because there was nothing to indicate a trend; good or bad. We now have a trend and that trend is positive. I will leave it at that.
The doctor's words only served to put a period on the end of a sentence that Willem and I previously created together in a matter of minutes: I looked at him; he smiled; I spoke; he said my breath smelled; I asked him why he was so handsome and he replied because mommy is so beautiful. Simple banter that speaks volumes more than a spread sheet full of numbers ever could.
It amazes me to no end the amount of support that our family has received from family, friends, and people we have never met. Thank you all for being part of the team: thank you to those who have taken Lili and Wyatt; thank you to those who have brought food; thank you to those who have taken me to movies to distract me; thank you to those who have offered to help; thank you to those who have sent money; thank you to those who have made me laugh; thank you to the makers of blankets; thank you to the spaghetti dinner benefit organizer; thank you to my teammates at work and to my brothers in arms; thank you to those who made me go for a run and listened to me whine about it; thank you to all of you who prayed or sent happy thoughts. Thank you to that incredible person who left his state and came to me because I said that I needed him.
Speaking of people who always seems to be there when I need them... I was in the kitchen listening to Syd and Erin talk about curriculum night at school and how he plans on handling Willem's education and I just had to smile. I find a great amount of comfort knowing that he, Erin, and my mother are on the job and willing to do what they do so I can do my job over seas without having to worry so much.
A special thank you to Erin who is a pillar of strength and a seemingly endless supply of confidence when I have none. She is my anchor and everything that is wonderful about my life. Thank you Erin for your encouragement and support. I love you.
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Thank you Nancy and aunt Peggy for bringing food over today. Great timing. Thank you!
Thank you Megan for your very generous Paypal donation. We are very grateful. Thank you.
Thank you Megan for your very generous Paypal donation. We are very grateful. Thank you.
Monday, September 12, 2011
Great day for Willem today. Willem did two laps around the ninth floor; brushed his own teeth; and played Candyland with the speech pathologist. When Erin told me over the phone I got so excited I told a bunch of my fellow soldiers while they were loading equipment and they cheered. I nearly cried. Because I do that. Also told my 1SG and I got a high five. Excellent.
I finally got to see Willem myself around 6PM and entered his room to find him sleeping. He slept until about ten minutes to eight. Before I left, I told him that I love him and he smiled and replied, "I love you too." Beautiful words. Beautiful.
Willem's good numbers are up today. Way up. Yes!
Chemo at 9pm tonight.
There will be a new author of Willem's blog come the ides of September: My step dad, Syd, is taking over the blog as I am leaving the state for training; then it's off to Afghanistan. Syd has been my partner through this nightmare and has not left my side. He has been there to hold me up emotionally when I felt I could no longer stand. He is a very positive and supportive person so I look forward to his take on Willem's recovery. Thank you, Syd, for taking over. Good luck.
I finally got to see Willem myself around 6PM and entered his room to find him sleeping. He slept until about ten minutes to eight. Before I left, I told him that I love him and he smiled and replied, "I love you too." Beautiful words. Beautiful.
Willem's good numbers are up today. Way up. Yes!
Chemo at 9pm tonight.
There will be a new author of Willem's blog come the ides of September: My step dad, Syd, is taking over the blog as I am leaving the state for training; then it's off to Afghanistan. Syd has been my partner through this nightmare and has not left my side. He has been there to hold me up emotionally when I felt I could no longer stand. He is a very positive and supportive person so I look forward to his take on Willem's recovery. Thank you, Syd, for taking over. Good luck.
Sunday, September 11, 2011
And... Take A Step Back
Yet another setback to echo our major achievements of the week; and involving blood: bloody emesis and bloody stool. In talking to the doctor, I've decided to take Erin's approach to the problem which is that it's one setback of many occurring during an upward trend; i.e., Willem's still getting better. Willem's numbers doing well enough to continue suggesting that Willem is on the mend and that this current issue is probably just another viral or bacterial infection occurring as a result of having a suppressed immune system.
Another scope was done because of the bleeding. Willem's throat looking good (healing) and nothing to suggest that he should have trouble talking or swallowing. Scope found that his esophagus healing; stomach good; bleeding in intestines. Biopsy done -- waiting for results. Lumbar puncture came back negative for anything to suggest brain damage. Trending upward.
Thank you Jane for the milk, chili, dip, and chips. Thank you for the laughs as well. Needed.
Another scope was done because of the bleeding. Willem's throat looking good (healing) and nothing to suggest that he should have trouble talking or swallowing. Scope found that his esophagus healing; stomach good; bleeding in intestines. Biopsy done -- waiting for results. Lumbar puncture came back negative for anything to suggest brain damage. Trending upward.
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Thank you aunt Peri, agian, for taking Wyatt and Liliana -- that helps us out so much. And thank you for the food and other stuff as well. You are awesome!Thank you Jane for the milk, chili, dip, and chips. Thank you for the laughs as well. Needed.
Saturday, September 10, 2011
Steady As She Goes
Nothing really significant to report today -- Willem is doing okay and had some good numbers. Still on the mend slowly but surely.
Spoke with today's nurse about the nose plugging incident that happened last night and she agreed that that was a bad method to use to get Willem to swallow. So that will not happen again and, if it does, I'm allowed to throw whomever is doing it through the wall. Well... She didn't actually say that I could but...
I entered Willem's room today to find him and Erin putting a jigsaw puzzle together. I love Erin. Erin informed me that Willem got up, with assistance, to use the bathroom. Twice. He also did some walking without the aid of a walker. These are improvements.
Erin and I took Willem for another walk around the 9th floor again before we left. I held him by his elbow the whole way but he was pretty stable. Doing well.
Spoke with today's nurse about the nose plugging incident that happened last night and she agreed that that was a bad method to use to get Willem to swallow. So that will not happen again and, if it does, I'm allowed to throw whomever is doing it through the wall. Well... She didn't actually say that I could but...
I entered Willem's room today to find him and Erin putting a jigsaw puzzle together. I love Erin. Erin informed me that Willem got up, with assistance, to use the bathroom. Twice. He also did some walking without the aid of a walker. These are improvements.
Erin and I took Willem for another walk around the 9th floor again before we left. I held him by his elbow the whole way but he was pretty stable. Doing well.
Friday, September 9, 2011
Long Day
Willem received his new broviac catheter today and I was told by Erin and Ba that everything went well. I didn't get to see Willem until 6:30pm because I was in Lansing doing what Michigan National Guard soldiers do when they gear up for war. Yes, I am in the National Guard, and, yes, I am still - at this juncture - going over seas to do my part in the fight against terror.
Erin, Wyatt, Liliana, and I arrived to find the nurse giving Willem some liquid Tylenol via a syringe and I got to witness the nurse technician plugging Willem's nose, and the nurse massaging Willem's throat in an effort to get him to swallow. They were telling him to swallow but he screamed, "I can't!" To say that I wanted to kill both of them is really putting it mildly but I'm tired and do not feel like creatively expressing the emotional volcano that was that moment. They did not, however, know I was angry; I controlled myself.
Still awaiting results of the lumbar puncture. Could be a couple days until we find out. On that note, however, I did ask Willem why he couldn't swallow and he gave me a funny look and began to dig in his ear. He then dug out an imaginary something from his ear, pinched it between his index finger and thumb, and gave it to me. I pinched the invisible something between my fingers and asked Willem what it was. He did not answer. I asked him again why he could not swallow and he said, "Because of (indistinct words)..." I asked him again and he replied, "Because of the thing I gave you from my ear." Holding the invisible something between my fingers I asked Willem what it was and he simply replied, "Eggs."
I don't know what your thoughts are after reading our conversation but you might be feeling something near what I was feeling at that moment. I asked Willem if the eggs were in his throat and he nodded. The nurse and I looked in his throat; her with her wimpy flashlight and, me, with my super duper put-the-nurse's-wimpy-flashlight-to-shame LED flashlight (conveniently attached the belt of my uniform). I had to disappoint Willem by informing him that there were little bumps in the back of his throat but they were not eggs. I added that the bumps were there because he has been sick and that it would now be okay to swallow.
The nurse will be wheeling Willem into a different room later tonight so that he can watch the Celebration on the Grand fireworks. He will have one of the best views in Grand Rapids. If he's pulling imaginary eggs from his ears then this just might turn out to be one of the best fireworks displays he's ever seen.
Erin, Wyatt, Liliana, and I arrived to find the nurse giving Willem some liquid Tylenol via a syringe and I got to witness the nurse technician plugging Willem's nose, and the nurse massaging Willem's throat in an effort to get him to swallow. They were telling him to swallow but he screamed, "I can't!" To say that I wanted to kill both of them is really putting it mildly but I'm tired and do not feel like creatively expressing the emotional volcano that was that moment. They did not, however, know I was angry; I controlled myself.
Still awaiting results of the lumbar puncture. Could be a couple days until we find out. On that note, however, I did ask Willem why he couldn't swallow and he gave me a funny look and began to dig in his ear. He then dug out an imaginary something from his ear, pinched it between his index finger and thumb, and gave it to me. I pinched the invisible something between my fingers and asked Willem what it was. He did not answer. I asked him again why he could not swallow and he said, "Because of (indistinct words)..." I asked him again and he replied, "Because of the thing I gave you from my ear." Holding the invisible something between my fingers I asked Willem what it was and he simply replied, "Eggs."
I don't know what your thoughts are after reading our conversation but you might be feeling something near what I was feeling at that moment. I asked Willem if the eggs were in his throat and he nodded. The nurse and I looked in his throat; her with her wimpy flashlight and, me, with my super duper put-the-nurse's-wimpy-flashlight-to-shame LED flashlight (conveniently attached the belt of my uniform). I had to disappoint Willem by informing him that there were little bumps in the back of his throat but they were not eggs. I added that the bumps were there because he has been sick and that it would now be okay to swallow.
The nurse will be wheeling Willem into a different room later tonight so that he can watch the Celebration on the Grand fireworks. He will have one of the best views in Grand Rapids. If he's pulling imaginary eggs from his ears then this just might turn out to be one of the best fireworks displays he's ever seen.
Thursday, September 8, 2011
Snuggle Time
Willem is getting tested for Adenovirus because of the bloody stool and bloody urine that he had a few days ago and doesn't have any more. HemOnc doctors are all back from holiday and must have missed ordering lab work while they were away. Sorry, that's me trying to be funny. So we're all back to wearing gowns and gloves again.
Willem is talking again and actually did some swallowing: swallowed some sprite and water then asked for pizza. In fact, he saw some pizza on TV and started asking for pizza again. Informed us that we can get some pizza down stairs.
HemOnc team is gong to put in a broviac catheter, which is a more permanent line, tomorrow at 2pm. They will also do another lumbar puncture to look for, or rule out. any ensephalopathy.
Willem spent a lot of time snuggling with me in the reclining chair and it was wonderful and warm. He has regained more control with his hands as evidenced by the putty sculptures he was making with with a clay-like substance called "therapeutic putty" he got from OT.
HemOnc requested blood samples from Erin, Wyatt, Lili, and myself in the very unlikely event that Willem will need a bone marrow transplant. The doctor stressed that a transplant would be very unlikely but likes to be prepared.
Found out today that the doctors here at HDCH have been in continual contact with two HLH experts: Dr. Filipovich of Cincinnati Children's Hospital, and Dr. McClain of Texas Children's Hospital.
All in all, Willem is making progress. Good day today.
Wednesday, September 7, 2011
A Resounding No Way to Baby Food
Willem did another two laps around the HemOnc floor -- again, begrudgingly I hear -- and we entered his room to find him passed out in the recliner.
For a change of pace, I hought I would try some baby food this evening - chicken and gravy - but when I approached Willem with it, I could tell right away it wasn't going to happen. I tried anyway and I was waved off with a hand and a grimace. Damn. He did take, and chew, a chocolate chip cookie, however, but he refused to swallow it. When I asked him if it hurt too much to swallow he nodded. When I asked him if it hurt too much to talk, he nodded. Double damn. Frustration ensues and we take a proverbial step backwards.
Willem is getting some nutrients via the central line but he really needs to eat and hold some real food. His ability to do so would be another step forward and would certainly make me feel better about his progress. Eating, digesting, and... Well... Pooping brings him closer to home. The HemOnc team and I may be expecting too much, however, and Willem, Willem's body, keeps reeling us right back in to reality. That reality being that this is a slow process and we need to take it easy.
We set the ball in motion, today, to take Willem's education into consideration. Tomorrow he will have some homework. And... I have a feeling we'll get reeled back in on that one as well. Baby steps.
For a change of pace, I hought I would try some baby food this evening - chicken and gravy - but when I approached Willem with it, I could tell right away it wasn't going to happen. I tried anyway and I was waved off with a hand and a grimace. Damn. He did take, and chew, a chocolate chip cookie, however, but he refused to swallow it. When I asked him if it hurt too much to swallow he nodded. When I asked him if it hurt too much to talk, he nodded. Double damn. Frustration ensues and we take a proverbial step backwards.
Willem is getting some nutrients via the central line but he really needs to eat and hold some real food. His ability to do so would be another step forward and would certainly make me feel better about his progress. Eating, digesting, and... Well... Pooping brings him closer to home. The HemOnc team and I may be expecting too much, however, and Willem, Willem's body, keeps reeling us right back in to reality. That reality being that this is a slow process and we need to take it easy.
We set the ball in motion, today, to take Willem's education into consideration. Tomorrow he will have some homework. And... I have a feeling we'll get reeled back in on that one as well. Baby steps.
Eager
PT a no go this morning. During the pre-walk exercises Willem said that he needed a break, reached for his water, and threw up before he could get a drink. He threw up about a cup of the usual green goo (bile) so no PT until this afternoon.
The Hematology/Oncology (HemOnc) team thinks that, because his whole GI system is still inflamed, he is still in a lot of pain which would cause the stomach to react unfavorably to exercise. Willem will now have a continuous flow of morphine going in to him which should help him with the PT as well as any swallowing issues.
HemOnc team have decided to add Cyclosporine as part of Willem's therapy because the team is eager to see more progress faster. Cyclosporine is usually used in transplant patients but success has been found in using it in HLH treatment as well. Side effects: hair growth is one... Now picturing Willem with a mustache.
The HemOnc team still wants to move forward with the swallow study because they fear that Willem might be at risk of aspiration pneumonia and they're eager to rule it out via the swallow study. I just hope Willem participates.
Resting now.
The Hematology/Oncology (HemOnc) team thinks that, because his whole GI system is still inflamed, he is still in a lot of pain which would cause the stomach to react unfavorably to exercise. Willem will now have a continuous flow of morphine going in to him which should help him with the PT as well as any swallowing issues.
HemOnc team have decided to add Cyclosporine as part of Willem's therapy because the team is eager to see more progress faster. Cyclosporine is usually used in transplant patients but success has been found in using it in HLH treatment as well. Side effects: hair growth is one... Now picturing Willem with a mustache.
The HemOnc team still wants to move forward with the swallow study because they fear that Willem might be at risk of aspiration pneumonia and they're eager to rule it out via the swallow study. I just hope Willem participates.
Resting now.
Chewing
We managed to get some semblance of a smile when we walked in the room this morning but when I took off my hat Willem furrowed his brow and frowned. I'm guessing he didn't like my shaved head.
Willem informed us that his throat hurts more today than it did yesterday. He's back to not wanting to swallow as much and reluctant to speak so I'm assuming his throat might be a little infected again. Willem had a little apple sauce and actually chewed on an Oreo cookie. It was quite exciting to see him chewing again -- something he has not done in over a month. I was later able to brush his teeth which is something else we haven't been able to do in a very long time.
The speech pathologist wanted to do a swallow study today which involves drinking a barium shake and watching where the fluid goes via x-ray. They wish to make sure that he is swallowing okay and that none of what he swallows is getting into his lungs. Erin and I feel that they're moving a little too quickly... If he didn't swallow an Oreo cookie -- something he likes -- what makes them think he's going to swallow yummy barium?
Offered to read to Willem but he just wanted to sleep. Cannot blame him really.
Ahhh... PT. No rest for the weary.
Can't stay as long today... Too much to do before... Well, just too much to do.
Willem informed us that his throat hurts more today than it did yesterday. He's back to not wanting to swallow as much and reluctant to speak so I'm assuming his throat might be a little infected again. Willem had a little apple sauce and actually chewed on an Oreo cookie. It was quite exciting to see him chewing again -- something he has not done in over a month. I was later able to brush his teeth which is something else we haven't been able to do in a very long time.
The speech pathologist wanted to do a swallow study today which involves drinking a barium shake and watching where the fluid goes via x-ray. They wish to make sure that he is swallowing okay and that none of what he swallows is getting into his lungs. Erin and I feel that they're moving a little too quickly... If he didn't swallow an Oreo cookie -- something he likes -- what makes them think he's going to swallow yummy barium?
Offered to read to Willem but he just wanted to sleep. Cannot blame him really.
Ahhh... PT. No rest for the weary.
Can't stay as long today... Too much to do before... Well, just too much to do.
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Thank you Michael. Again. Thank you for the amazingly generous donation to Willem's recovery. And FYI: Wyatt told me that I needed to video call you and tell you to come back. How's that for a complement.
Thank you Uncle Skip, Aunt Sharon, Dan, Susie, Trevor, Jonah, Eli, & Ty -- we saw your note when we arrived and I'm guessing that the books and Legos are from you. The book I was trying to read to Willem was one of the books you left. Thank you for stopping by -- I was hoping to be here when aunt Sharon stopped by so you could talk shop with me.
Thank you Jody for the hug. I needed that.
Tuesday, September 6, 2011
Shave And A Haircut
The die is cast. Willem's hair has fallen out enough, and at such a rate, that it's time for the head shave. I will be shaving my head as well.
Willem did TWO laps around the 9th floor and did so at a pretty good pace. It was difficult for him but he did great!
Holding Pattern
We're just kind of hanging out around Willem's bed watching everything that he does - because he's doing a lot more - and looking for every tiny positive sign of progress; whether it be physical or mental. Em was reading There's A Boy in the Girls Bathroom to Willem and he seemed cool with it for a while.
Someone came by from Mary Free Bed to deliver Willem's boots that are used to stretch out his achilles tendons. They look a lot like the early snowboard securing method before the boot/binding combo they have now.
Willem is saying some weird stuff from time to time like, "I need to get the blood out of my eyes" or "I want apple juice; it's in the pink bucket" but I'm not sure what to make of that. I have ideas about it but I don't go there. No point really.
Doctor just came in... I have only good news so no real point in giving all the numbers unless you want them. The most important number we needed -- the Absolute Neutrophil Count (ANC)-- we finally got today after having all zeros for over a week. When the ANC goes up that means his insides will start healing.
No more blood in urine or stool.
Willem is going to go walk a lap now. Cross your fingers.
Someone came by from Mary Free Bed to deliver Willem's boots that are used to stretch out his achilles tendons. They look a lot like the early snowboard securing method before the boot/binding combo they have now.
Willem is saying some weird stuff from time to time like, "I need to get the blood out of my eyes" or "I want apple juice; it's in the pink bucket" but I'm not sure what to make of that. I have ideas about it but I don't go there. No point really.
Doctor just came in... I have only good news so no real point in giving all the numbers unless you want them. The most important number we needed -- the Absolute Neutrophil Count (ANC)-- we finally got today after having all zeros for over a week. When the ANC goes up that means his insides will start healing.
No more blood in urine or stool.
Willem is going to go walk a lap now. Cross your fingers.
Monday, September 5, 2011
Another Pretty Good Day
Nothing really significant to report today. We've got forward momentum. Willem's numbers are basically all pretty good. The nurse Willem has now could play a good Nurse Ratched if anyone decides to do a One Flew Over the Cuckoo's Nest remake any time soon. Willem informed me that his nurse can turn you into stone if you look into her eyes. I'm with him on this one.*
Obviously Willem is saying more and he's definitely there, mentally. And I keep testing him: We put him in his wheelchair, which he hates, at 12:20PM and told him that he had to be in the chair for at least 30 minutes. After five minutes, he began complaining about being in the chair and begged to go to bed. I then told Willem that he had 25 more minutes to go and that he had to be in the chair until, pointing to the clock on the wall, the big hand was on the 12... He started whining that Daddy lied to him and that I told him only 25 minutes more to go. He calculated my time error instantly. Test passed.
Willem is now asking for food and has offered to split a bread stick with me. He is also expressing a desire to get out of bed to use the bathroom, in lieu of the current method.
He is on a "flatworm" kick at the moment, saying such things as "There are flatworms eating the dead skin on my hands" or "just a second, there's a flatworm in my throat."
I'm remembering, now, what Grandpa B. told me once when we were golfing: "Well... You hit it forward and you made it past the Ladies tee; and in golf, that's what you want." Willem is progressing much in the same fashion as I golf: The hits are forward (usually past the ladies tee) but are mostly slices and end up in the rough, trees, water, or the bunkers but, y'know what? The hits are still forward and, like me, he'll still finish this game and forget about it soon enough over a few pints with friends at the pub. Proverbially speaking.
I don't play golf anymore and I hope Willem never plays this game ever again either.
Obviously Willem is saying more and he's definitely there, mentally. And I keep testing him: We put him in his wheelchair, which he hates, at 12:20PM and told him that he had to be in the chair for at least 30 minutes. After five minutes, he began complaining about being in the chair and begged to go to bed. I then told Willem that he had 25 more minutes to go and that he had to be in the chair until, pointing to the clock on the wall, the big hand was on the 12... He started whining that Daddy lied to him and that I told him only 25 minutes more to go. He calculated my time error instantly. Test passed.
Willem is now asking for food and has offered to split a bread stick with me. He is also expressing a desire to get out of bed to use the bathroom, in lieu of the current method.
He is on a "flatworm" kick at the moment, saying such things as "There are flatworms eating the dead skin on my hands" or "just a second, there's a flatworm in my throat."
I'm remembering, now, what Grandpa B. told me once when we were golfing: "Well... You hit it forward and you made it past the Ladies tee; and in golf, that's what you want." Willem is progressing much in the same fashion as I golf: The hits are forward (usually past the ladies tee) but are mostly slices and end up in the rough, trees, water, or the bunkers but, y'know what? The hits are still forward and, like me, he'll still finish this game and forget about it soon enough over a few pints with friends at the pub. Proverbially speaking.
I don't play golf anymore and I hope Willem never plays this game ever again either.
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Thank you Wendy and Gary for stopping by yesterday -- Sorry we couldn't get you up to see Willem (bad timing) -- and thank you for the gifts.
Thank you Stephanie for your very generous Paypal donation. We are very grateful. Thank you.
Thank you Ba for getting lunch today. We had some great progress (and a couple minor setbacks) while you were gone and I missed having you around.
*In all fairness to Willem's current nurse, nurse Kristi in ICU set the standard and, although two have come close, one more so than the other, none can compare. Willem's current nurse is all business, and does her job well, but is no nurse Kristi.
*In all fairness to Willem's current nurse, nurse Kristi in ICU set the standard and, although two have come close, one more so than the other, none can compare. Willem's current nurse is all business, and does her job well, but is no nurse Kristi.
Sunday, September 4, 2011
Up Down Up Down Up
Willem's nurse cut us off as we were approaching his room; I could see her making a B-line towards me and I could easily see by her face that she was delivering good news. She informed me that Willem has made and incredible turn around from yesterday and I grabbed her and gave her a hug. I nearly cried. Because I do that.
Wyatt was the first to get within reach of Willem and Wyatt was quickly caught by Willem's eager hand. Willem pulled him in; hugged him; and said, "I love you Wyatt." Wyatt got the first I love you from Willem. Mommy and Daddy had to ask.
Willem then proceeded to tell me to beat up the nurses because they are evil and they hurt him.
There is some discussion of keeping the NJ feeding tube out since Willem is able to swallow and, I am ever so delighted to say, communicate his needs.
Today is a good day.
Thank you uncle Greg for entertaining Wyatt and Liliana today. And, actually, thank you for just being there for us.
Thank you Melanie for the Meijer gift card. I think we can find Erin's favorite margarita mix there. Just kidding.
Wyatt was the first to get within reach of Willem and Wyatt was quickly caught by Willem's eager hand. Willem pulled him in; hugged him; and said, "I love you Wyatt." Wyatt got the first I love you from Willem. Mommy and Daddy had to ask.
Willem then proceeded to tell me to beat up the nurses because they are evil and they hurt him.
There is some discussion of keeping the NJ feeding tube out since Willem is able to swallow and, I am ever so delighted to say, communicate his needs.
Today is a good day.
Thank you uncle Greg for entertaining Wyatt and Liliana today. And, actually, thank you for just being there for us.
Thank you Melanie for the Meijer gift card. I think we can find Erin's favorite margarita mix there. Just kidding.
Saturday, September 3, 2011
Harder to Write Today
Frustrated is the word that keeps popping into my head. One minute I'm looking at Willem and he's sound asleep and then I look over and he has his NJ tube out again. Neither Erin or I saw him move. Erin asks me why I'm acting so mad and I can only reply that it is because I am mad. I am angry and frustrated.
I stare disappointed into Willem's confused eyes, trying to convey my anger at him for pulling out his feeding tube. Does he know why I am angry? Does he know what he has done? Why can he not understand that he needs that damn tube?! My first-born son is wasting away before my eyes and I am powerless to stop it.
Willem whines and I become suffocated by my own guilt for being angry with him.
I stare disappointed into Willem's confused eyes, trying to convey my anger at him for pulling out his feeding tube. Does he know why I am angry? Does he know what he has done? Why can he not understand that he needs that damn tube?! My first-born son is wasting away before my eyes and I am powerless to stop it.
Willem whines and I become suffocated by my own guilt for being angry with him.
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Thank you John for your email to me. Your words are kind and very touching and in them I found some strength. Thank you.
Thank you Leigh for taking Wyatt and Liliana today.
Thank you Olga and RJ for the gas card. Excellent idea as we use up a lot of gas driving back and forth. Thank you very much.
Thank you Olga and RJ for the gas card. Excellent idea as we use up a lot of gas driving back and forth. Thank you very much.
Rough Morning
Arrived to find that Willem had a rough morning of fever, diarrhea, and vomiting. There was a little blood in the stool and the emesis was green (bile) from the bilirubin -- which is now up to 16.9 -- not having an exit strategy. Nothing has been grown to suggest what the diarrhea is all about so it is probably mucositis.
Willem's white blood cell count was up a little but his neutrophils were still at zero. Hemoglobin is at 8.3 and normal, for him, would be between 12.5 to 16 so he'll be getting some red blood cells this morning along with his platelets.
Still holding off on feeding him via the NJ because of the diarrhea. Doctor is afraid of irritating the GI too much.
Had trouble doing physical therapy (PT) this morning: Willem was just sick and tired. The physical therapist said his heel chords are very tight and added that he's not been getting enough PT. To which I replied, "Shame on everybody." I will now do some PT stretches with Willem.
Doctor still very hopeful and positive. There are many good numbers in relation to Willem's state of health. He is still on the mend and in very good hands.
I asked the doctor if it was okay to give him kisses. She looked at me kind of funny and said "Of course."
Willem's white blood cell count was up a little but his neutrophils were still at zero. Hemoglobin is at 8.3 and normal, for him, would be between 12.5 to 16 so he'll be getting some red blood cells this morning along with his platelets.
Still holding off on feeding him via the NJ because of the diarrhea. Doctor is afraid of irritating the GI too much.
Had trouble doing physical therapy (PT) this morning: Willem was just sick and tired. The physical therapist said his heel chords are very tight and added that he's not been getting enough PT. To which I replied, "Shame on everybody." I will now do some PT stretches with Willem.
Doctor still very hopeful and positive. There are many good numbers in relation to Willem's state of health. He is still on the mend and in very good hands.
I asked the doctor if it was okay to give him kisses. She looked at me kind of funny and said "Of course."
Friday, September 2, 2011
He Speaks!!!
Willem said his first complete sentence since August 14! I was rubbing his head while the nurse technician (NT) was changing his bedding and he was moaning. I don't remember what I said to him but he said, "I want you to get out of here."
I wasn't sure at first he said anything at all because the NT was talking with Erin and I exclaimed, "Shhh! I think he just said something!" So I asked Willem if he just said something and to say it again. "Willem. Willem. What did you just say?" Moan. Moan. "I want you to get out of here." Do you know how beautiful those words were? Wow. What an awesome experience!
Now to put it in context: He was getting his bedding changed and... um... other things so it was probably embarrassing to have us there watching. Not sure. I took it for what was said and wasn't at all hurt by it but Erin thought that maybe he was embarrassed by us being there and I thought it a good point.
Medical stuff: Lab results back from the bone marrow test and the doctor said that Willem's bone marrow is empty. What does that mean? It means that Willem's was 5% full and normal is 80 - 90% full. The test also revealed that there were still more histiocytes (the stuff that has been eating all the good cells) than there should be. The doctor stated that she was disappointed by the results but still very hopeful.
They will be holding off on the chemo until Monday.
Giving him Gamma Globulin to provide Willem with passive immunity.
Adding Prozac to his list of medications.
He's been holding on to transfusions -- which is good.
Will be increasing his calorie intake.
Bilirubin up again; to 16 which was probably because he pulled his NJ out.
Diarrhea increased so not putting anything in the NJ just yet.
I wasn't sure at first he said anything at all because the NT was talking with Erin and I exclaimed, "Shhh! I think he just said something!" So I asked Willem if he just said something and to say it again. "Willem. Willem. What did you just say?" Moan. Moan. "I want you to get out of here." Do you know how beautiful those words were? Wow. What an awesome experience!
Now to put it in context: He was getting his bedding changed and... um... other things so it was probably embarrassing to have us there watching. Not sure. I took it for what was said and wasn't at all hurt by it but Erin thought that maybe he was embarrassed by us being there and I thought it a good point.
Medical stuff: Lab results back from the bone marrow test and the doctor said that Willem's bone marrow is empty. What does that mean? It means that Willem's was 5% full and normal is 80 - 90% full. The test also revealed that there were still more histiocytes (the stuff that has been eating all the good cells) than there should be. The doctor stated that she was disappointed by the results but still very hopeful.
They will be holding off on the chemo until Monday.
Giving him Gamma Globulin to provide Willem with passive immunity.
Adding Prozac to his list of medications.
He's been holding on to transfusions -- which is good.
Will be increasing his calorie intake.
Bilirubin up again; to 16 which was probably because he pulled his NJ out.
Diarrhea increased so not putting anything in the NJ just yet.
*****************************************
Thank you John for your very generous Paypal donation to Willem's recovery. Our family thanks you.
Thank you HDCH for providing sitters for Willem so I can go home and sleep and not go nutso. I predict a nice long run tomorrow.
Thank you Terri for watching Wyatt and Liliana today so Erin and I could spend more uninterrupted time with Willem. You are AWESOME!!!
One of Those Days
Willem's restraints were replaced by big white boxing glove-like mitts that doubled as a pillow for him at times which was kind of cute actually. Eventually the mitts went away too as one of the nurses had fashioned a, for lack of a better word, halter-top-like-shirt-thingy that covered the central line. Willem no longer seems interested in tugging at the line.
For me it was a long and sleepless night followed by a long and sleepless day. Lack of sleep does wonders to play tricks on one's psyche and never for the good. Found today to be particular stressful but, in looking back on it, not sure why. Today was no worse than others; clearly the lack of sleep.
Willem gave Wyatt and Liliana a hug. Heart wrenching.
Erin broke down and cried a few times while we were at our childrens' school open house when the teachers and parents came up to us to give their support. Erin said that she usually just cries in the shower so the children don't see. I did not know this. The stress is taking its toll to be sure. We are, however, finding our footing and pressing on.
We are truly blessed by the outpouring of support we've received.
For me it was a long and sleepless night followed by a long and sleepless day. Lack of sleep does wonders to play tricks on one's psyche and never for the good. Found today to be particular stressful but, in looking back on it, not sure why. Today was no worse than others; clearly the lack of sleep.
Willem gave Wyatt and Liliana a hug. Heart wrenching.
Erin broke down and cried a few times while we were at our childrens' school open house when the teachers and parents came up to us to give their support. Erin said that she usually just cries in the shower so the children don't see. I did not know this. The stress is taking its toll to be sure. We are, however, finding our footing and pressing on.
We are truly blessed by the outpouring of support we've received.
*********************************
Thank you Trevor for your Paypal donation. Thank you so much and I truly hope to meet you soon.
Thank you Greg for your Paypal donation. I miss seeing you and having our laughs. 'Could use some laughs.
Thank you Greg for your Paypal donation. I miss seeing you and having our laughs. 'Could use some laughs.
Thursday, September 1, 2011
Biopsy revealed that Willem has a serious yeast infection in his esophagus; probably caused by the chemo, steroids, and HLH.
Willem was put on Ambisome for the infection and will be on it until the infection clears. This drug is hard on kidneys so they'll be watching his kidneys closely.
Willem's white blood cell count was at zero because of chemo and HLH so they will be holding off on the VP16 / Etopocide / chemo until after his bone marrow test which is tomorrow at 11:30am. His NJ feeding tube will go back in at that time as well. He will also be started on Neupogen to bring his white blood cell counts back up.
Decreasing his steroids to half (2.5mg) two times per day which should bring him out of his funk a little more.
All in all the doc said that there is a lot that looks good. Will know more after the bone marrow test comes back.
Thank you grandma and grandpa Weston for the visit. Hopefully by the time Willem gets out of the hospital you two can figure out the parking situation.
Thank you Suzy. Wow. Thank you so much. You are a super soldier and a super person. Thank you.
Thank you Betsy for the all the food! The cookies are for mommy and daddy only, right?
Willem was put on Ambisome for the infection and will be on it until the infection clears. This drug is hard on kidneys so they'll be watching his kidneys closely.
Willem's white blood cell count was at zero because of chemo and HLH so they will be holding off on the VP16 / Etopocide / chemo until after his bone marrow test which is tomorrow at 11:30am. His NJ feeding tube will go back in at that time as well. He will also be started on Neupogen to bring his white blood cell counts back up.
Decreasing his steroids to half (2.5mg) two times per day which should bring him out of his funk a little more.
All in all the doc said that there is a lot that looks good. Will know more after the bone marrow test comes back.
***********************************
Thank you grandma and grandpa Weston for the visit. Hopefully by the time Willem gets out of the hospital you two can figure out the parking situation.
Thank you Suzy. Wow. Thank you so much. You are a super soldier and a super person. Thank you.
Thank you Betsy for the all the food! The cookies are for mommy and daddy only, right?
Preventive Medicine
Add restraints to the list of medicines. Around 5am Willem tried pulling out his main line. Now he gets restraints. This sucks.
Some poor kid is screaming in the room next door. That sucks too.
Couldn't get Willem to swallow any water this morning but he sure does like having it in his mouth. Makes him smile -- which doesn't suck.
Some poor kid is screaming in the room next door. That sucks too.
Couldn't get Willem to swallow any water this morning but he sure does like having it in his mouth. Makes him smile -- which doesn't suck.
Wednesday, August 31, 2011
Tears
September 1, 2011 approximately 1:45am. I heard Willem's voice.
Not really expecting an answer at all, I asked Willem what he wanted -- as he was reaching for absolutely nothing. His eyes looked into mine with part determination and part desperation and it really looked as though he wanted to speak. So I put my ear to his mouth and from some dusty unfathomable place, I hear this dry and pained little voice say "water."
I cried.
The nurse had stated only an hour previous that Willem wasn't supposed to have anything by mouth but I asked anyway. I told her I just heard my baby's voice and that he asked for water. I told her that I was certain that he swallowed (monumental achievement) and asked for water. We gave him one tiny little drop in a spoon and he swallowed it. Then we gave him another and he reached for the spoon and drank the next drop in, swallowed, and smiled.
Had I not been here with him to ask him what he wanted... You get the idea.
I think I will snuggle with him some more.
Not really expecting an answer at all, I asked Willem what he wanted -- as he was reaching for absolutely nothing. His eyes looked into mine with part determination and part desperation and it really looked as though he wanted to speak. So I put my ear to his mouth and from some dusty unfathomable place, I hear this dry and pained little voice say "water."
I cried.
The nurse had stated only an hour previous that Willem wasn't supposed to have anything by mouth but I asked anyway. I told her I just heard my baby's voice and that he asked for water. I told her that I was certain that he swallowed (monumental achievement) and asked for water. We gave him one tiny little drop in a spoon and he swallowed it. Then we gave him another and he reached for the spoon and drank the next drop in, swallowed, and smiled.
Had I not been here with him to ask him what he wanted... You get the idea.
I think I will snuggle with him some more.
An Intimate Moment Tainted
In an attempt to comfort Willem, and myself I suppose, I manage to squeeze into a spot next to him in his bed. He raised his shaking arm and put it around my neck and I snuggled next to him and stroked his hair.
His hair is falling out. My baby's hair is falling out and my world is coming apart.
Another IV drip alarm. Another cycle complete. Six IV drips -- six different cycles with six different times. Cycles complete like a snooze alarm.
The nurse tells me that at least one parent spends the night.
Willem lay awake. Restless. Agitated.
Daddy stares at walls and fools himself.
Willem pulls out his feeding tube.
Intimate.
His hair is falling out. My baby's hair is falling out and my world is coming apart.
Another IV drip alarm. Another cycle complete. Six IV drips -- six different cycles with six different times. Cycles complete like a snooze alarm.
The nurse tells me that at least one parent spends the night.
Willem lay awake. Restless. Agitated.
Daddy stares at walls and fools himself.
Willem pulls out his feeding tube.
Intimate.
Recovering
Apart from the central line catheter, there's only one tube, the NJ feeding tube, left. He's down from 12 bags of stuff hanging on hooks to 3 bags of stuff hanging on hooks. Took 30 days to get here but my boy is on the mend.
Thank you cousins Dave and Nan. Thank you. Can I thank you again?
Thank you Shannon and Cheryl for the Legos, Bionical and Gatorade. Willem will smile. Which is awesome.
Walking
Willem walked out of PICU -- with the aid of a walker -- and was then wheeled up to the 9th floor. Over all responding well to treatment. Doctors will be doing another bone marrow test on Friday so anxiously awaiting the results of that test.
Keep praying everybody.
Keep praying everybody.
Out of PICU
Willem will be moved out of the PICU in a matter of minutes and relocated to the Hematology/Oncology floor for the remainder of his recovery.
His NJ tube (feeding tube) was reinserted and the second he regained consciousness he went right for it and tried to pull it out. He is now wearing arm braces that prevent him from bending at the elbows. I took them off once but he went right for the tube again. And I'm pretty sure his brain is okay because he's finding ways to use the environment around him to get a good tug at the feeding tube. Stinker.
It has been 24 hours since his throat scope and biopsy were done so we're hoping for some idea as to what is going on in his throat but the general consensus is that he'll be just fine.
Thank you Dean, you big lug, I thank you, and my family thanks you.
Thank you Jackie and Christian for watching our babes today. Thank you for having a Nerf war with them, and playing Lego Star Wars with them, and sword fighting, and... Thank you.
His NJ tube (feeding tube) was reinserted and the second he regained consciousness he went right for it and tried to pull it out. He is now wearing arm braces that prevent him from bending at the elbows. I took them off once but he went right for the tube again. And I'm pretty sure his brain is okay because he's finding ways to use the environment around him to get a good tug at the feeding tube. Stinker.
It has been 24 hours since his throat scope and biopsy were done so we're hoping for some idea as to what is going on in his throat but the general consensus is that he'll be just fine.
Thank you Dean, you big lug, I thank you, and my family thanks you.
Thank you Jackie and Christian for watching our babes today. Thank you for having a Nerf war with them, and playing Lego Star Wars with them, and sword fighting, and... Thank you.
Tuesday, August 30, 2011
I Want My Mommy
Stopped by to see Willem in the evening after picking up and feeding Wyatt and Liliana.
Nurse said that Willem didn't like the communication board that Speech Pathology delivered -- it's several laminated sheets with drawn pictures of feelings, body parts, and other statements -- and ended up throwing it at her. She tried again later and the only thing he pointed to was the picture that says, "I want my mommy."
Willem is pretty medicated at the moment; morphine, I believe, so not much out of him other than a warm and relaxed look about him. He did, however, manage a bright smile when I showed him the Bionical he just got in the mail (thank you Andrea). I have come to look forward to, love, cherish, and... Ugh. I don't have the words... Those smiles mean everything to me right now.
Nurse said that Willem didn't like the communication board that Speech Pathology delivered -- it's several laminated sheets with drawn pictures of feelings, body parts, and other statements -- and ended up throwing it at her. She tried again later and the only thing he pointed to was the picture that says, "I want my mommy."
Willem is pretty medicated at the moment; morphine, I believe, so not much out of him other than a warm and relaxed look about him. He did, however, manage a bright smile when I showed him the Bionical he just got in the mail (thank you Andrea). I have come to look forward to, love, cherish, and... Ugh. I don't have the words... Those smiles mean everything to me right now.
Scope of Things
Willem had his throat scoped at noon and had his chest and abdominal drainage tubes taken out as well.
They had just completed doing the scope as I arrived at Willem's room. I asked the doctor who greeted me how his throat looked and received an immediate, "Terrible." I had to wait a few agonizing minutes to find out the extent of this "terrible" but I finally got to sit down with the doctor. He had pictures to show me as well...
We now know why Willem didn't want to swallow. It has been difficult to describe but imagine the times in your life when you've had a sore throat. What made it painful for you to swallow was just a little inflammation that probably looked slightly more red in the infected area than the other areas. Well, Willem's entire throat basically looks like it had been boiled -- it's white. I cannot even fathom the pain he must be in. I wouldn't want to swallow either.
What is it? We do not know at this juncture. They did a biopsy and it will take between 24 and 48 hours to find out. Could be viral or fungal infection, or a side effect of the etoposide (his chemo). The doctor said that if they know what it is, then they can treat it. So now we wait. And hope.
People have asked when Willem can go home and I have to say that we don't even think about that yet. We're still in day-by-day mode. But I have managed to think that it would be a month. But I don't know why I have that number in my head -- nobody told me that it would be a month.
Positives: Well, he's still doing better than he was a week ago at this time. He's breathing on his own. Less machines. Chest and abdominal tubes are out. May still be moved out of ICU today. Lots of good stuff. Hopeful. Cautiously optimistic.
Thank you Katie for bringing us dinner last night -- very awesome of you.
Thank you Jennifer for all of the food you brought us this morning. The Radosevich family will not have to cook anything for some time.
Prepared food is an awesome time saver.
They had just completed doing the scope as I arrived at Willem's room. I asked the doctor who greeted me how his throat looked and received an immediate, "Terrible." I had to wait a few agonizing minutes to find out the extent of this "terrible" but I finally got to sit down with the doctor. He had pictures to show me as well...
We now know why Willem didn't want to swallow. It has been difficult to describe but imagine the times in your life when you've had a sore throat. What made it painful for you to swallow was just a little inflammation that probably looked slightly more red in the infected area than the other areas. Well, Willem's entire throat basically looks like it had been boiled -- it's white. I cannot even fathom the pain he must be in. I wouldn't want to swallow either.
What is it? We do not know at this juncture. They did a biopsy and it will take between 24 and 48 hours to find out. Could be viral or fungal infection, or a side effect of the etoposide (his chemo). The doctor said that if they know what it is, then they can treat it. So now we wait. And hope.
People have asked when Willem can go home and I have to say that we don't even think about that yet. We're still in day-by-day mode. But I have managed to think that it would be a month. But I don't know why I have that number in my head -- nobody told me that it would be a month.
Positives: Well, he's still doing better than he was a week ago at this time. He's breathing on his own. Less machines. Chest and abdominal tubes are out. May still be moved out of ICU today. Lots of good stuff. Hopeful. Cautiously optimistic.
Thank you Katie for bringing us dinner last night -- very awesome of you.
Thank you Jennifer for all of the food you brought us this morning. The Radosevich family will not have to cook anything for some time.
Prepared food is an awesome time saver.
Monday, August 29, 2011
Lunch Lady
Aunt Leigh Ann brought Willem a few books to read and one of them, a comic (oops, sorry; a "graphic novel") is called Lunch Lady and the Cyborg Substitute. I thought it a long shot but I asked Willem if he wanted me to read it to him. He nodded. :-)
That zombie-like look he gets when he's watching TV, or staring at nothing, went away as he looked at the pictures while I read. When we got to a good spot, where one would probably see a, "To Be Continued" I said that we would take a break and read some more later. He smiled (it was a genuine smile this time -- I could tell) and nodded.
That zombie-like look he gets when he's watching TV, or staring at nothing, went away as he looked at the pictures while I read. When we got to a good spot, where one would probably see a, "To Be Continued" I said that we would take a break and read some more later. He smiled (it was a genuine smile this time -- I could tell) and nodded.
Emotions
Willem pulled out his naso tubes at some point in the morning. Nobody could say when, however. Which bothers me quite a bit.
Arrived to find OT and PT placing Willem in a wheelchair. They said that he stood up on his own.
Probably moving out of ICU at some point today. Chest and Abdominal drainage tubes coming out tomorrow.
Because Willem still refuses to swallow, the the throat doctor wants to do a scope to see if there's an obstruction or if something else is the issue. Scope will be tomorrow.
Willem seems to stare right through me; heart-wrenching. He was, however, able to point out Darth Vader and Chewbacca in a Lego Star Wars book. He is making progress.
Arrived to find OT and PT placing Willem in a wheelchair. They said that he stood up on his own.
Probably moving out of ICU at some point today. Chest and Abdominal drainage tubes coming out tomorrow.
Because Willem still refuses to swallow, the the throat doctor wants to do a scope to see if there's an obstruction or if something else is the issue. Scope will be tomorrow.
Willem seems to stare right through me; heart-wrenching. He was, however, able to point out Darth Vader and Chewbacca in a Lego Star Wars book. He is making progress.
Sunday, August 28, 2011
Take the Bad With the Good
Got a pretty good idea today what we're up against now that Willem's off the ventilator and they've decreased his dopey meds. Willem is being a little anger ball, which is to be expected, and being a little aggressive. I was pretty sure that he wanted to rip my face off this morning while I was trying to get him to cooperate with the nurse tech.
Doctor said that he'd like to get one of the tubes out that's running through his nose and down his throat and into his stomach but he has to see that Willem is willing to start swallowing in lieu of drooling. I asked Willem if he wanted a popsicle and he nodded that he did. I gave him a really tiny bit and he closed his eyes and smiled big. At least I think it was a smile -- tough to say. He didn't swallow it and it eventually just ran out the side of his mouth. Frustrating.
Some mental and physical actions made me want to check Willem's mental status so I asked him, among other things, if he knew who I was and, after staring at me for a while, shook his head. That had the emotional effect of picking me up off the ground and throwing me against the wall. It stung a little.
Shortly thereafter stubborn boy and stubborn daddy got in to somewhat of a pissing match over him needing to swallow and, although I probably shouldn't have, I asked him if he wanted daddy to leave and he gave two thumbs up (thank you Leigh, by the way, that thumbs up/thumbs down stuff is working great; I think he's got it) and nodded. So... packed up my stuff and left. Maybe he just needs some alone time. Guess I can't blame him.
Thank you Leigh for getting me out of the hospital today and buying me breakfast. I needed the distraction more than I had realized.
Benefit Spaghetti Dinner for Willem:
https://www.facebook.com/event.php?eid=211804885543234
Doctor said that he'd like to get one of the tubes out that's running through his nose and down his throat and into his stomach but he has to see that Willem is willing to start swallowing in lieu of drooling. I asked Willem if he wanted a popsicle and he nodded that he did. I gave him a really tiny bit and he closed his eyes and smiled big. At least I think it was a smile -- tough to say. He didn't swallow it and it eventually just ran out the side of his mouth. Frustrating.
Some mental and physical actions made me want to check Willem's mental status so I asked him, among other things, if he knew who I was and, after staring at me for a while, shook his head. That had the emotional effect of picking me up off the ground and throwing me against the wall. It stung a little.
Shortly thereafter stubborn boy and stubborn daddy got in to somewhat of a pissing match over him needing to swallow and, although I probably shouldn't have, I asked him if he wanted daddy to leave and he gave two thumbs up (thank you Leigh, by the way, that thumbs up/thumbs down stuff is working great; I think he's got it) and nodded. So... packed up my stuff and left. Maybe he just needs some alone time. Guess I can't blame him.
Thank you Leigh for getting me out of the hospital today and buying me breakfast. I needed the distraction more than I had realized.
Benefit Spaghetti Dinner for Willem:
https://www.facebook.com/event.php?eid=211804885543234
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