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!
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.
Saturday, October 29, 2011
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
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