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.
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.
Sunday, November 27, 2011
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
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