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.
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.
Wednesday, September 7, 2011
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.
***********************************
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.
***********************************
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.
Subscribe to:
Posts (Atom)