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.
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, August 31, 2011
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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