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.
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
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
I Like the Change in Goals
Spent the night at the hospital because Willem didn't want me to leave. We watched a few Harry Potter movies until the power went out (routine test) and we both went to sleep. Neither of us slept well: Him for obvious reasons and me because it's an ICU... Who sleeps well in an ICU?
Awoke to find Willem blanket less and curled into a ball. Someone had taken off the warm blanket and put it in a chair and the other one was at the foot of his bed. 'Guessing that he had been changed and cleaned early this morning and they decided to just leave the blankets off. I had a chat so-to-speak with the nurse.
Nurse and I spoke of some goals for Willem for today: Washing hair and getting out of bed. Much better than last week's goals of... Well... Let's not bother with that -- if you've been following, you get the idea.
More talk of removing drainage tubes today and not sure yet when, or if, that will happen.
Awoke to find Willem blanket less and curled into a ball. Someone had taken off the warm blanket and put it in a chair and the other one was at the foot of his bed. 'Guessing that he had been changed and cleaned early this morning and they decided to just leave the blankets off. I had a chat so-to-speak with the nurse.
Nurse and I spoke of some goals for Willem for today: Washing hair and getting out of bed. Much better than last week's goals of... Well... Let's not bother with that -- if you've been following, you get the idea.
More talk of removing drainage tubes today and not sure yet when, or if, that will happen.
Saturday, August 27, 2011
All numbers looking great. Bilirubin is down from 13 to 9 which seems to support the theory that getting some real food in the GI is what Willem's liver needed. Liver is on the mend.
Willem is far more alert today than yesterday but not willing to talk just yet because his throat is, as far as we can determine, really bothering him. So he's watching a lot of TV and raising his hand when he needs something; and that something, thus far, has alluded us.
Nurse will be putting Willem in a stretcher-like chair around 4pm today which is good for a change as well as good for his lungs. He will not be allowed to leave the room however -- something I had not realized.
Doctor spoke of taking out his last chest tube tomorrow and, quite possibly, the last abdominal tube the following day. More talk of moving him out of the ICU early next week.
I am enjoying watching the machines, tubes, and wires gradually disappear and beginning to feel more comfortable with the optimistic moments.
Thank you Peri for taking Lilia and Wyatt for a few days -- I missed them but you can have them back now. :-)
Thank you to the Ray's for the lasagna -- wishing now that we didn't share it with Syd & Mary. :-) And thank you for watching Wyatt and Liliana so much. You guys are awesome.
Thank you Jody and family for the wonderful card and gift certificate that we will most certainly use for fuel.
Thank you Pam
Thank you to friends of Syd & Mary that are sending thoughts and prayers.
Willem is far more alert today than yesterday but not willing to talk just yet because his throat is, as far as we can determine, really bothering him. So he's watching a lot of TV and raising his hand when he needs something; and that something, thus far, has alluded us.
Nurse will be putting Willem in a stretcher-like chair around 4pm today which is good for a change as well as good for his lungs. He will not be allowed to leave the room however -- something I had not realized.
Doctor spoke of taking out his last chest tube tomorrow and, quite possibly, the last abdominal tube the following day. More talk of moving him out of the ICU early next week.
I am enjoying watching the machines, tubes, and wires gradually disappear and beginning to feel more comfortable with the optimistic moments.
********** THANK YOUS**********
Thank you to the Ray's for the lasagna -- wishing now that we didn't share it with Syd & Mary. :-) And thank you for watching Wyatt and Liliana so much. You guys are awesome.
Thank you Jody and family for the wonderful card and gift certificate that we will most certainly use for fuel.
Thank you Pam
Thank you to friends of Syd & Mary that are sending thoughts and prayers.
Friday, August 26, 2011
Cautiously Optimistic and Pleasantly (can't remember)
Liliana and Wyatt being in the room with Erin and myself today had the effect of completely erasing whatever I was going to blog about so you get... Sorry, interrupted again... You get whatever I think was said and in piecemeal.
The doctor said that he was "...cautiously optimistic and pleasantly (I can't remember the word. It might have been 'surprised' but that doesn't seem very doctory [yes, I just made up a word])..." in regards to Willem's recovery. The gist is that he's getting better; slowly, but surely.
There are a few concerns, and, thankfully, the doctor elected to not cover those today and instead just talked about how Willem will be weened off of his sleepy meds with the hope of being able to wheel him around in a chair tomorrow and get a change of scenery, etc. Doctor added, again, that the hope is to have Willem out of the ICU by Tuesday and relocated to the Hematology/Oncology floor.
Thank you to 1SG and Mrs. "Top" for stopping by my work today to visit -- it was great seeing you and I felt pretty good after talking to the both of you. I noticed that my hospitality smiles came more naturally after our conversation.
Nice segway: And thank you to my employer, my department in particular, who continue to bend over backwards and cover down to accommodate me; first, for the military, and, now, for this. Thank you gang -- I am grateful and appreciate that your being there affords me the opportunity to spend more time with my son.
Thank you to my teammates: Dean, Amanda, and Patrick
Thank you to my super: Jim
Thank you to the director: Scott
Thank you Gretchen for your generous Paypal donation! Thank you.
The doctor said that he was "...cautiously optimistic and pleasantly (I can't remember the word. It might have been 'surprised' but that doesn't seem very doctory [yes, I just made up a word])..." in regards to Willem's recovery. The gist is that he's getting better; slowly, but surely.
There are a few concerns, and, thankfully, the doctor elected to not cover those today and instead just talked about how Willem will be weened off of his sleepy meds with the hope of being able to wheel him around in a chair tomorrow and get a change of scenery, etc. Doctor added, again, that the hope is to have Willem out of the ICU by Tuesday and relocated to the Hematology/Oncology floor.
Thank you to 1SG and Mrs. "Top" for stopping by my work today to visit -- it was great seeing you and I felt pretty good after talking to the both of you. I noticed that my hospitality smiles came more naturally after our conversation.
Nice segway: And thank you to my employer, my department in particular, who continue to bend over backwards and cover down to accommodate me; first, for the military, and, now, for this. Thank you gang -- I am grateful and appreciate that your being there affords me the opportunity to spend more time with my son.
Thank you to my teammates: Dean, Amanda, and Patrick
Thank you to my super: Jim
Thank you to the director: Scott
Thank you Gretchen for your generous Paypal donation! Thank you.
Thursday, August 25, 2011
Chemo Days Are Poopy
8:00PM
Arrived to find Willem pretty out of it and my heart sank when I saw that all-too-familiar mauvish pink bucket on his bed Just looking at it makes me want to vomit in it. Nurse informed us that Willem received his chemo around 3:00PM so he was a little nauseous from the treatment and did throw up a little bit -- hopefully because of the chemo and not other factors. Because the feeding tube bypasses the stomach, however, we do not have to worry about him throwing up any of the nourishment. Yay.
Heart rate, respiratory rate, and body temp. up a little bit but I'm willing myself to stay positive.
There are certain nurses that I wish were here all the time... I don't know how to explain it but some of them just make me feel that everything is going to be okay.
Arrived to find Willem pretty out of it and my heart sank when I saw that all-too-familiar mauvish pink bucket on his bed Just looking at it makes me want to vomit in it. Nurse informed us that Willem received his chemo around 3:00PM so he was a little nauseous from the treatment and did throw up a little bit -- hopefully because of the chemo and not other factors. Because the feeding tube bypasses the stomach, however, we do not have to worry about him throwing up any of the nourishment. Yay.
Heart rate, respiratory rate, and body temp. up a little bit but I'm willing myself to stay positive.
There are certain nurses that I wish were here all the time... I don't know how to explain it but some of them just make me feel that everything is going to be okay.
EXTUBATED!!!!
Willem had his ventilation tubes removed at 10:47am today. Yes! He is breathing awesomely on his own and... The doctor had a long list of wonderful things to say but he had me at "hello" and I just tuned out after that. The bottom line is that Willem is doing fantastic.
A nasojejunal feeding tube was added so Willem could begin taking in sustenance (Peptamin Jr. made by Nestle) that actually ends up, after bypassing the stomach, in the parts that are supposed to have food. Again, having some real food going through the normal GI cycle should improve Willem's liver, which, apart from the high(er) bilirubin numbers, is beginning to look a little better as well.
Some talk of transferring him out of ICU, possibly, early next week and moving him to the Hematology / Oncology floor to continue his recovery there. I'm excited about this.
************************THANK YOUS**************************
Forgive me for being unformal and using first names but I do wish to acknowledge you, thank you, and not completely out you. If that makes any sense.
Thank you cousin Theresa for the HUGE box of stuff for Willem, and I'm guessing all the children in the ICU (referring to the 20 pound bags of suckers and Jolly Ranchers). So much great stuff in there -- that sketchy thing is PERFECT for writing!
Thank you Bob for the great phone conversation last night; my parents speak so highly of you so it was great to finally (meet) you.
Thank you Greg for organizing a spaghetti benefit dinner (that I can't be at) for Willem.
Thank you Dan for getting me off my backside and running about 9 days worth of stress and anxiety out of me -- that run kicked my you-know-what! But I had a great time. Thank you!
Thank you to the following people for their generous Paypal donation to Willem's recovery:
Tina
Patricia
Kathleen
Carmen
Carie
Thank you Thank you Thank you!!!!
Thank you Susie, Dan, Trevor, Jonah, Eli & Ty for the pumpkin bread. Awesome!
A nasojejunal feeding tube was added so Willem could begin taking in sustenance (Peptamin Jr. made by Nestle) that actually ends up, after bypassing the stomach, in the parts that are supposed to have food. Again, having some real food going through the normal GI cycle should improve Willem's liver, which, apart from the high(er) bilirubin numbers, is beginning to look a little better as well.
Some talk of transferring him out of ICU, possibly, early next week and moving him to the Hematology / Oncology floor to continue his recovery there. I'm excited about this.
************************THANK YOUS**************************
Forgive me for being unformal and using first names but I do wish to acknowledge you, thank you, and not completely out you. If that makes any sense.
Thank you cousin Theresa for the HUGE box of stuff for Willem, and I'm guessing all the children in the ICU (referring to the 20 pound bags of suckers and Jolly Ranchers). So much great stuff in there -- that sketchy thing is PERFECT for writing!
Thank you Bob for the great phone conversation last night; my parents speak so highly of you so it was great to finally (meet) you.
Thank you Greg for organizing a spaghetti benefit dinner (that I can't be at) for Willem.
Thank you Dan for getting me off my backside and running about 9 days worth of stress and anxiety out of me -- that run kicked my you-know-what! But I had a great time. Thank you!
Thank you to the following people for their generous Paypal donation to Willem's recovery:
Tina
Patricia
Kathleen
Carmen
Carie
Thank you Thank you Thank you!!!!
Thank you Susie, Dan, Trevor, Jonah, Eli & Ty for the pumpkin bread. Awesome!
Wednesday, August 24, 2011
Squeaky Tail
Willem received a fluffy toy from his grandmother, my mom, the other day and Erin was just looking at it and noticed that it didn't have any stuffing in it and asked, jokingly, if it was supposed to be road kill. The nurse said that it was a chew toy and that he had seen them at Petsmart. It has a squeaky tail. My mother bought my son a raccoon chew toy with a squeaky tail!
We all had a good laugh at my mother's expense but it became less funny and more ingenious upon hearing her explanation: It was soft; not bulky; and cute. Having heard her say that I realized that I had witnessed the nurse use the chew toy as a soft support between Willem's bare shoulder and the hard plastic ventilator joints and tubes.
Thank you, mother, for the laughter and for just being you. Love you.
We all had a good laugh at my mother's expense but it became less funny and more ingenious upon hearing her explanation: It was soft; not bulky; and cute. Having heard her say that I realized that I had witnessed the nurse use the chew toy as a soft support between Willem's bare shoulder and the hard plastic ventilator joints and tubes.
Thank you, mother, for the laughter and for just being you. Love you.
Nearing A Possible Extubation
12:30pm
Arrived to find Willem with his eyes open again but watching A Land Before Time this time around. Got a big smile out of him eventually (he seemed more interested in the movie -- I don't know why, we have it at home).
No more talk of V.O.D., which is great, but bilirubin is up to 10 today so still issues with the liver. Confidence is still high though.
Nurse stated that, during rounds today, there was talk of extubating tomorrow. Willem will have to demonstrate that he can breath on his own, which he appears to be doing quite well, and do so while they continue to turn down the Breaths Per Minute (BPM) on the ventilator. I mentioned to Willem that he has to show us that he can breath on his own and I saw three yellow lines on the ventilator monitor (which represent his own, unassisted, breaths) increase in height and rate. Gave me a smile.
So, hopefully, off the ventilator and sedation tomorrow.
Willem is off another med, the insulin, now that his body is auto regulating. Auto regulating is a good thing.
Getting more and more of our Willem back each day.
Arrived to find Willem with his eyes open again but watching A Land Before Time this time around. Got a big smile out of him eventually (he seemed more interested in the movie -- I don't know why, we have it at home).
No more talk of V.O.D., which is great, but bilirubin is up to 10 today so still issues with the liver. Confidence is still high though.
Nurse stated that, during rounds today, there was talk of extubating tomorrow. Willem will have to demonstrate that he can breath on his own, which he appears to be doing quite well, and do so while they continue to turn down the Breaths Per Minute (BPM) on the ventilator. I mentioned to Willem that he has to show us that he can breath on his own and I saw three yellow lines on the ventilator monitor (which represent his own, unassisted, breaths) increase in height and rate. Gave me a smile.
So, hopefully, off the ventilator and sedation tomorrow.
Willem is off another med, the insulin, now that his body is auto regulating. Auto regulating is a good thing.
Getting more and more of our Willem back each day.
Tuesday, August 23, 2011
Pretty Much A Good Day
PM
Arrived to find Willem with his eyes open and able to nod or shake his head in response to questions. He pointed to the television so I turned it on and he elected to watch Sponge Bob Square Pants -- one of his favorites. I asked Willem if he could squeeze my fingers and he could -- he squeezed them pretty hard considering.
Willem does have jaundice so he's looking a wee yellow and the doctor added that he may even turn a little orange before this is through. But, apart from the jaundice, Willem is looking pretty good.
There has been some talk of extubating in a few days; docs are a little leery of moving too quickly but are weighing the advantages and disadvantages. It had been previously mentioned that there is an advantage, to the liver, of having some sustenance move through his mouth and GI as opposed to through the PICC.
So... It would be nice to see Willem respond positively to the extubation, take in nutrients through the mouth and, consequently (and hopefully), see a reduction in the bilirubin numbers; i.e. healthier liver.
Still too soon to tell what the GI is doing (refer to the posts about his colon being necrotic) but the numbers are supporting the idea that things are healing in there. The blood in the stool I reported on earlier might even be one of those indicators.
Paws with a cause stopped by the outside of Willem's room and he smiled big. Thanks PAWS.
Thank you to my dear friend Tina, City Beautiful Design, for creating that "Donate" button for Willem -- you saved me hours of trying to figure that out. Oh, and thank you for making sure it worked ;-)
Thank you Jane for the chicken bake. That was really AWESOME!!!
Arrived to find Willem with his eyes open and able to nod or shake his head in response to questions. He pointed to the television so I turned it on and he elected to watch Sponge Bob Square Pants -- one of his favorites. I asked Willem if he could squeeze my fingers and he could -- he squeezed them pretty hard considering.
Willem does have jaundice so he's looking a wee yellow and the doctor added that he may even turn a little orange before this is through. But, apart from the jaundice, Willem is looking pretty good.
There has been some talk of extubating in a few days; docs are a little leery of moving too quickly but are weighing the advantages and disadvantages. It had been previously mentioned that there is an advantage, to the liver, of having some sustenance move through his mouth and GI as opposed to through the PICC.
So... It would be nice to see Willem respond positively to the extubation, take in nutrients through the mouth and, consequently (and hopefully), see a reduction in the bilirubin numbers; i.e. healthier liver.
Still too soon to tell what the GI is doing (refer to the posts about his colon being necrotic) but the numbers are supporting the idea that things are healing in there. The blood in the stool I reported on earlier might even be one of those indicators.
Paws with a cause stopped by the outside of Willem's room and he smiled big. Thanks PAWS.
Thank you to my dear friend Tina, City Beautiful Design, for creating that "Donate" button for Willem -- you saved me hours of trying to figure that out. Oh, and thank you for making sure it worked ;-)
Thank you Jane for the chicken bake. That was really AWESOME!!!
Some Positives to Chew On Before Lunch
I will spare you all the ites, odes, and ydes and just tell you that all of the HLH indicators that the doctor's look at are down; i.e. at this juncture, Willem is winning his HLH battle.
Another ultrasound was performed on his liver to double check for the V.O.D. I spoke of yesterday and it was found that the blood in his liver was flowing properly today. This is good news but I was informed that another -ologist was looking at the ultrasound and had other concerns. So... Maybe no V.O.D. but other concerns. Not going to worry about it now and I don't want you to either.
Willem is watching Harry Potter at the moment but is very drugged. He did try to talk a few times. Nurse Jason mentioned to us that he's going to see if a dry-erase board will be allowed since Willem is trying to communicate and maybe some dexterity toys of some sort.
Still fighting. Still stable.
Thank you Peri for watching Wyatt and Liliana today.
Thank you in advance, Brett, for lunch. Way cool of you. Can't wait to see you.
Child life just brought in a Nerf basket ball and hoop.
Another ultrasound was performed on his liver to double check for the V.O.D. I spoke of yesterday and it was found that the blood in his liver was flowing properly today. This is good news but I was informed that another -ologist was looking at the ultrasound and had other concerns. So... Maybe no V.O.D. but other concerns. Not going to worry about it now and I don't want you to either.
Willem is watching Harry Potter at the moment but is very drugged. He did try to talk a few times. Nurse Jason mentioned to us that he's going to see if a dry-erase board will be allowed since Willem is trying to communicate and maybe some dexterity toys of some sort.
Still fighting. Still stable.
Thank you Peri for watching Wyatt and Liliana today.
Thank you in advance, Brett, for lunch. Way cool of you. Can't wait to see you.
Child life just brought in a Nerf basket ball and hoop.
8/23 640am
I just received a call from Willem's bedside nurse that started out wonderful but, as is the nature of... um... this, it has to end on a low note. I answered the phone in a rush-out-of-bed stupor and tried to take it all in but all that's really sticking in my head is, "Willem's doing great, we watched Cars twice last night..." and "... but he had three bloody stools."
Looking at my notes now and seeing that I didn't take notes that made much sense either. I remember my legs wanting to collapse from underneath me while writing the note:
"3 bloody stools
white blood cells
down because of chemo
Oxygen cau
Hemoglobin going
down: coagulation
improving"
(It's on a yellow sticky note so that's why it's all truncated)
Sigh... I do not know what to make of this news. I did ask how worried I should be but Nurse said something like this: "I can't answer that but(medical blah blah) and (chemical this and that) Willem is stable and vitals are good."
I feel that this was a call to make sure I didn't get too far away from that pit of despair (because I was feeling a little better last night) but I am going to choose to hear it as: Willem watched cars last night and his vitals are good. So, Go Willem! Beat this thing and come home!
Some Thank yous:
Thank you Michael for still being so awesome. And for holding me accountable today.
Thank you Paul. It was good talking to you; you have a good heart.
Thank you Cousin Tony
Thank you Aunt Sandy -- It was so wonderful hearing your voice and laughing and talking with you last night.
Thank you Stacy for the song and trip down memory lane
Thank you Brett for the call, fun chat, and hopefully we can meet up for lunch today.
Thank you Adrienne for the words.
Looking at my notes now and seeing that I didn't take notes that made much sense either. I remember my legs wanting to collapse from underneath me while writing the note:
"3 bloody stools
white blood cells
down because of chemo
Hemoglobin going
down: coagulation
improving"
(It's on a yellow sticky note so that's why it's all truncated)
Sigh... I do not know what to make of this news. I did ask how worried I should be but Nurse said something like this: "I can't answer that but(medical blah blah) and (chemical this and that) Willem is stable and vitals are good."
I feel that this was a call to make sure I didn't get too far away from that pit of despair (because I was feeling a little better last night) but I am going to choose to hear it as: Willem watched cars last night and his vitals are good. So, Go Willem! Beat this thing and come home!
Some Thank yous:
Thank you Michael for still being so awesome. And for holding me accountable today.
Thank you Paul. It was good talking to you; you have a good heart.
Thank you Cousin Tony
Thank you Aunt Sandy -- It was so wonderful hearing your voice and laughing and talking with you last night.
Thank you Stacy for the song and trip down memory lane
Thank you Brett for the call, fun chat, and hopefully we can meet up for lunch today.
Thank you Adrienne for the words.
Monday, August 22, 2011
Donations
It pains my ego and hurts my pride but people have asked, and I know that none of this is about me...
I'm reminded of a favorite line in a country song that goes, "I ain't askin' nobody fer nothin'..." But for those of you who asked, and for those of you who want to, Erin has set up a Benefit Account for Willem through 5th 3rd Bank:
Make check payable to:
"For the Benefit of Willem Radosevich" and in the memo section add the account#: 7167276588
Mail check to:
Fifth Third Bank
4460 Cascade Road SE
Grand Rapids, MI 49546
PHONE: (616) 771-5656
I'm reminded of a favorite line in a country song that goes, "I ain't askin' nobody fer nothin'..." But for those of you who asked, and for those of you who want to, Erin has set up a Benefit Account for Willem through 5th 3rd Bank:
Make check payable to:
"For the Benefit of Willem Radosevich" and in the memo section add the account#: 7167276588
Mail check to:
Fifth Third Bank
4460 Cascade Road SE
Grand Rapids, MI 49546
PHONE: (616) 771-5656
Well, we're showing some signs of improvement. But...
A lot of information today but I'm going to try and summarize it as much as possible...
Doctors are saying that they're seeing some signs of improvement. However... However -- there's always this "however" -- the bilirubin in Willem's liver is at 8+ and getting worse. Also, Willem now has VOD (the link will say it's a side-effect of stem cell or bone marrow transplant and Willem has had neither) which means, basically, the blood in his liver is now flowing the wrong way.
We have been offered an experimental treatment for VOD, called, "Defibrotide" and we accepted. Willem is now part of a Human Research Study and they will be using a medication not yet FDA approved in the US but has been approved in Europe. If it works, we will know somewhere between 48 hours and 7 days, depending on how advanced Willem's VOD is.
Thank you Kelly for the card and gift certificate for Willem. To think that a person, whom I've not seen in 25 years, came to the hospital to deliver this heartwarming message to Willem, and in effect, to us, is an amazing concept. Thank you again Kelly. Wow. I cannot wait to tell Willem about all of the wonderful people who have taken an interest in him.
Thank you Peri for your visit today -- glad you were able to get in this time.
Thank you cousin Tony for the call -- you gave me some relief.
Doctors are saying that they're seeing some signs of improvement. However... However -- there's always this "however" -- the bilirubin in Willem's liver is at 8+ and getting worse. Also, Willem now has VOD (the link will say it's a side-effect of stem cell or bone marrow transplant and Willem has had neither) which means, basically, the blood in his liver is now flowing the wrong way.
We have been offered an experimental treatment for VOD, called, "Defibrotide" and we accepted. Willem is now part of a Human Research Study and they will be using a medication not yet FDA approved in the US but has been approved in Europe. If it works, we will know somewhere between 48 hours and 7 days, depending on how advanced Willem's VOD is.
Thank you Kelly for the card and gift certificate for Willem. To think that a person, whom I've not seen in 25 years, came to the hospital to deliver this heartwarming message to Willem, and in effect, to us, is an amazing concept. Thank you again Kelly. Wow. I cannot wait to tell Willem about all of the wonderful people who have taken an interest in him.
Thank you Peri for your visit today -- glad you were able to get in this time.
Thank you cousin Tony for the call -- you gave me some relief.
Sunday, August 21, 2011
Right now this is our everything. This is the only thing on our minds.
People keep asking me how Willem is doing and all I can say is "Critical but stable; and stable is good." Well this is what critical but stable looks like. For those of you who are praying; for those of you who are sending good vibes and kharma to Willem, keep praying for, and sending good vibes and kharma for, STABLE. Willem needs STABLE.
Saturday, August 20, 2011
It's the Little Things
We walked in Willem's room this morning, and I like to think that it was my voice that made him open his eyes and look at me, but either way, he opened his eyes and looked at me so I bounded, barely drying the wet from my hands, the seven feet between the sink and his bed to talk to him while his eyes were still open.
I exclaimed to Erin that Willem opened his eyes and she said, in her stoic fashion, "I know, I saw that." and calmly went over to his bedside and leaned over Willem. Erin talked to Willem and he opened his eyes again -- a palpable recognition took place, and he reached up to touch Erin's face. Forget every amazing thing I have seen in my life and travels around the world, I can say, without any revocation, that that was the most beautiful sight I have ever seen. No words were spoken; just a tired reach of a sick child's arm to softly touch his mother's face.
Willem is still on the ventilator and no news, as of yet, whether that will come out today or not. He seems to be in a calm and I get a feeling that, were the ventilation tubes removed, we would not witness the agitated and restless state we saw the last time they extubated. Just a feeling.
Visitors:
Thank you Greg for visiting last night -- I truly miss our joking around so it was fun having you in our home. Thank you Rhonda for the hand-made blanket and pillow for Willem; that was sweet. The blanket and pillow will be in Willem's hospital room with him.
Friday, August 19, 2011
8/19 600pm
Nurse said that Willem is finally resting, agitation free, and recommended no visitors and added that she really didn't want anyone even touching him. I took that as a hint to stay away as much as it kills me not to see him. The way I look at it, the nurse is sitting there 12 hours a day, right next to Willem, responding to his every need, she's the boss.
We're letting Willem rest.
Thank you Chuck and Scott for the visit. Glad that Michael had someone to speak computer stuff with.
Thank you Kim and Heather for the humongous pizzas and salads. Thank you. Thank you. Thank you.
Good night Willem. Mummy and Daddy love you. Rest and be strong.
We're letting Willem rest.
Thank you Chuck and Scott for the visit. Glad that Michael had someone to speak computer stuff with.
Thank you Kim and Heather for the humongous pizzas and salads. Thank you. Thank you. Thank you.
Good night Willem. Mummy and Daddy love you. Rest and be strong.
VISITORS
Please... While Willem is in ICU give us a call first if you want to visit because we're not always at the hospital. Also, Willem can't really have visitors at this juncture -- Willem is in a no-stim environment while on the ventilator; he's out and easily agitated by talking. If we're at the hospital we'll be happy to meet you downstairs for coffee or whatever or give us a call and come by the house. I love visitors.
More Thanks
We received a HUGE and much needed donation for our traveling-back-and-forth fuel expenses. Thank you so very much! And we got some coupons for the B.O.B. Thank you!
Thank you to my dear friend Michael for taking Liliana and Wyatt to Big Boy this morning and then to the Children's Museum for nearly 3 whole hours. You are an amazing human being Michael!
Thank you Mr & Mrs. 1SGT Reed for the continued cards, thoughts, prayers and for the phone minutes. We are very very grateful.
And thank you to all of you for your continued thoughts and prayers.
Thank you to my dear friend Michael for taking Liliana and Wyatt to Big Boy this morning and then to the Children's Museum for nearly 3 whole hours. You are an amazing human being Michael!
Thank you Mr & Mrs. 1SGT Reed for the continued cards, thoughts, prayers and for the phone minutes. We are very very grateful.
And thank you to all of you for your continued thoughts and prayers.
Just a Quick Thanks
Willem has had, I believe, three plasma transfusions and is currently receiving donated blood. Thank you plasma and blood donors!
Two new meds: Fluconozole and Pentamidine. Two routine meds that are given with chemo.
Two new meds: Fluconozole and Pentamidine. Two routine meds that are given with chemo.
8/19 1000am The Chemo Begins
As the title suggests Willem will be starting chemo (Etoposide) at noon. Anxious would be what I am feeling right now; hopeful for a quick change for the better and worried about... Well, just plain worried.
The plan is that Willem get chemo twice a week - Friday and Tuesday - for two weeks, then once a week then etc. Hopefully there is a quick turn around after the chemo begins and then he will be moved to the Hematology Oncology (just found out it's not Hemog but Hemoc [or something like that])floor, floor nine, for his chemo treatment. The rest will be outpatient treatment when that point comes and we're looking at 6 months of this.
Willem will stay on the ventilator today.
The plan is that Willem get chemo twice a week - Friday and Tuesday - for two weeks, then once a week then etc. Hopefully there is a quick turn around after the chemo begins and then he will be moved to the Hematology Oncology (just found out it's not Hemog but Hemoc [or something like that])floor, floor nine, for his chemo treatment. The rest will be outpatient treatment when that point comes and we're looking at 6 months of this.
Willem will stay on the ventilator today.
8/19 930am
Missed rounds but nurse tells me that there really wasn't any new information. Should find out pretty soon if they're actually going to do chemo or not. If they do not I will be surprised.
Willem managed to make it through the night and morning without a fever so it was nice seeing him with a blanket on him for once. Developed a LOW grade fever this morning at 8am and got a little Tylenol.
Infectious Diseases (ID) doctor stated that, when he looked at the latest chest x rays, there appeared to be pneumonia but the nurse, who sits by Willem's bedside for 12 hours, said she did not hear that when the doctors did their rounds. Nurse Kristi ordered -- no, seriously ordered -- the ID doc to go double check that and get back with me. I love nurse Kristi.
Okay... Just waiting on the Hemo group (I think I've heard them referred to as the "Hemog") to come up to let us know what we're doing.
Thank you Michael for taking Wyatt and Liliana to Big Boy for breakfast and the Children's museum. You are the best!
Willem managed to make it through the night and morning without a fever so it was nice seeing him with a blanket on him for once. Developed a LOW grade fever this morning at 8am and got a little Tylenol.
Infectious Diseases (ID) doctor stated that, when he looked at the latest chest x rays, there appeared to be pneumonia but the nurse, who sits by Willem's bedside for 12 hours, said she did not hear that when the doctors did their rounds. Nurse Kristi ordered -- no, seriously ordered -- the ID doc to go double check that and get back with me. I love nurse Kristi.
Okay... Just waiting on the Hemo group (I think I've heard them referred to as the "Hemog") to come up to let us know what we're doing.
Thank you Michael for taking Wyatt and Liliana to Big Boy for breakfast and the Children's museum. You are the best!
Thursday, August 18, 2011
8/18 1158pm
Good night Willem. I love you so much my son -- keep fighting -- Mummy and Daddy will see you in the morning.
8/18 324pm
Movies, thus far, have not proven to be an adequate escape for me. Today, for example, Michael and I went to see The Rise of the Planet of the Apes (awesome movie by the way. Well done.) and there was mention, albeit brief mention, of viral infection and the immune system and this tends to put me into a, for lack of better terminology, state.
MRI came back negative for any brain issues; he's still Willem up there. They will be performing a lumbar puncture shortly.
Doctors have decided to get a jump ahead of the HLH and go strait to the chemo. Willem will now be getting chemo therapy. Will be using Etoposide.
Positives:
MRI good.
Ultrasound of organs look great
Nervous system looks good
When he was lucid he was making sense; i.e. forming complete sentences
Labs are getting better
Hematology and Rheumatoid group is awesome, "top notch," and are pleased with the labs.
Erin is beautiful and stoic.
MRI came back negative for any brain issues; he's still Willem up there. They will be performing a lumbar puncture shortly.
Doctors have decided to get a jump ahead of the HLH and go strait to the chemo. Willem will now be getting chemo therapy. Will be using Etoposide.
Positives:
MRI good.
Ultrasound of organs look great
Nervous system looks good
When he was lucid he was making sense; i.e. forming complete sentences
Labs are getting better
Hematology and Rheumatoid group is awesome, "top notch," and are pleased with the labs.
Erin is beautiful and stoic.
8/18 947am
Doctor -- and when I say "doctor," I usually mean one of any number of the doctors working on Willem at that time -- called to reiterate that they have reintubated largely because they want to make sure that the HLH hasn't attacked his central nervous system.
Two things need to happen to discover this: 1) he needs an MRI and 2) a lumbar puncture; both of which he needs to be absolutely still for.
Two things need to happen to discover this: 1) he needs an MRI and 2) a lumbar puncture; both of which he needs to be absolutely still for.
8/18 915am
Doctor called: Putting Willem back on the ventilator because he remained highly agitated throughout the night and morning and his respiratory rate remained high. They will also be doing an MRI on his brain as there is some concern that the HLH has
Paraphrasing here but in the words of our dear friends Greg Gildner and Michael Birdman:
Willem had his ups and downs as his condition got worse, so Willem will have up and downs as his condition gets better.
Anxiously awaiting the MRI results now.
Paraphrasing here but in the words of our dear friends Greg Gildner and Michael Birdman:
Willem had his ups and downs as his condition got worse, so Willem will have up and downs as his condition gets better.
Anxiously awaiting the MRI results now.
Wednesday, August 17, 2011
8/17 348pm
Breathing heavy and highly agitated (sounds like his dad under normal circumstances) probably due to the high doses of steroids, or the tube going in his nose and down his throat, or the tape on his face, or... you get the idea.
Doctors had to give him ativan to calm him down and now he is sleeping.
On day 6 of 10 for the Typhoidal Tularemia treatment.
Paying particular attention to his neurological functions now. Which are good.
Visitors today:
Grandma and Grandpa Weston (Grandpa Weston's got a sensitive side; which I am very grateful for)
SSG Thomas
Time to go pay attention to our other children now. Hang in there Willem -- We love you so very much.
Doctors had to give him ativan to calm him down and now he is sleeping.
On day 6 of 10 for the Typhoidal Tularemia treatment.
Paying particular attention to his neurological functions now. Which are good.
Visitors today:
Grandma and Grandpa Weston (Grandpa Weston's got a sensitive side; which I am very grateful for)
SSG Thomas
Time to go pay attention to our other children now. Hang in there Willem -- We love you so very much.
8/17 1201pm
Willem is off the ventilator! He is trying to talk but having difficulty -- still a wee tipsy from the meds -- but did manage to say "hi" to me. Which made me cry. I dare you to make fun of me.
Sounds like his dedicated / heart line will be taken out of his arm pretty soon as well.
I know we have a really long way to go but I really want to thank my right hand man -- you know who you are -- for standing by me for every little up and major down. Thank you for your optimism, your wisdom, and for just plain being there. Go Team Willem.
Sounds like his dedicated / heart line will be taken out of his arm pretty soon as well.
I know we have a really long way to go but I really want to thank my right hand man -- you know who you are -- for standing by me for every little up and major down. Thank you for your optimism, your wisdom, and for just plain being there. Go Team Willem.
8/17 1102am
Not out of the woods yet but I have some pretty decent news:
The opposite of INtubate is EXtubate and guess what? The hospital is going to give breathing control back to Willem by extubating and taking him off the ventilator. If anyone is wondering... This is a good thing.
The hemotologist in charge of treating Willem for HLH is amazed that he is doing well enough to be off the ventilator already. She, the hemotologist, is careful to say that Willem is not out of the woods yet but is very optimistic about his recovery.
They will be changing his steroids to something that is a longer acting steroid that also happens to be in very short supply but he will get. He will also be put on a blood thinner because a clot was found in his liver. I have been assured that we do not have to worry about clots traveling and damaging anything else.
Again, not out of the woods but I have more good news than bad so I'm just giving out the good stuff.
For those of you that pray... I guess keep praying.
The opposite of INtubate is EXtubate and guess what? The hospital is going to give breathing control back to Willem by extubating and taking him off the ventilator. If anyone is wondering... This is a good thing.
The hemotologist in charge of treating Willem for HLH is amazed that he is doing well enough to be off the ventilator already. She, the hemotologist, is careful to say that Willem is not out of the woods yet but is very optimistic about his recovery.
They will be changing his steroids to something that is a longer acting steroid that also happens to be in very short supply but he will get. He will also be put on a blood thinner because a clot was found in his liver. I have been assured that we do not have to worry about clots traveling and damaging anything else.
Again, not out of the woods but I have more good news than bad so I'm just giving out the good stuff.
For those of you that pray... I guess keep praying.
Tuesday, August 16, 2011
8/16 717pm
The doctors talked to Erin this time, as I wasn't there for this one, so I will be losing a lot in translation because Erin doesn't get the medspeak. So here is what Erin's translation is:
Erin: Is he doing okay?
Doctors: Yes he is.
Erin: Cool.
Here's what I was able to get from Erin:
Willem does not have cancer.
Willem has not pooped (this is a good thing); he's keeping it in i.e. no diarrhea.
The hematologist was happy with how things were going.
The fluids in Willem's abdomen have gone down a little bit and doctors were able to feel the liver a little bit. Liver still seems swollen so an ultrasound was ordered.
Hope.
8/16 1149am
Rough night for Willem: temp was up to 104+ and doctor decided to increase the amount of kineret and temp is down to 100.5 at the moment so this is good. Increased the steroids. Not on insulin yet. Still on ventilator.
In order for this treatment to be successful or to have the best outcome, Willem's kidneys need to stay strong and Willem's kidneys are very strong. Heart good. Liver good. Lungs still lagging behind a little.
Doctors are aggressively treating for HLH.
We are in wait status now and, hopefully, we see some form of success in two or three days. Willem's recovery will, however, still be in terms of weeks and months.
Discovered that Typhoidal Tularemia not spreadable via human to human contact so we don't have to wear the gowns, gloves, and masks anymore.
Thank you SSG Thomas for stopping in to say hello. Much appreciated.
Willem opened his eyes for a second so I got in a "hi buddy" and then he was out.
In order for this treatment to be successful or to have the best outcome, Willem's kidneys need to stay strong and Willem's kidneys are very strong. Heart good. Liver good. Lungs still lagging behind a little.
Doctors are aggressively treating for HLH.
We are in wait status now and, hopefully, we see some form of success in two or three days. Willem's recovery will, however, still be in terms of weeks and months.
Discovered that Typhoidal Tularemia not spreadable via human to human contact so we don't have to wear the gowns, gloves, and masks anymore.
Thank you SSG Thomas for stopping in to say hello. Much appreciated.
Willem opened his eyes for a second so I got in a "hi buddy" and then he was out.
Monday, August 15, 2011
8/15 932pm
So much is riding on this next treatment. Doctor assures me that he's had a lot of success with this before but added that Willem is a very sick little boy. He feels confident with the vitals, numbers, etc., however, and is hopeful for success. If it works, it will be weeks before a complete turnaround. If it does not work, chemo is the next nightmare.
The doctors, nurses, etc. are an amazing group of people. I wish that I got Willem to the children's hospital a lot sooner yet glad that I got him there when I did. Team Willem ROCKS!
Another half of a xanax for me so hoping for slumber. They seem to work better with 3oz of Merlot.
Thank you to Olga for the AWESOME pasta chicken dish and the salad. That was very nice and thank you again.
The doctors, nurses, etc. are an amazing group of people. I wish that I got Willem to the children's hospital a lot sooner yet glad that I got him there when I did. Team Willem ROCKS!
Another half of a xanax for me so hoping for slumber. They seem to work better with 3oz of Merlot.
Thank you to Olga for the AWESOME pasta chicken dish and the salad. That was very nice and thank you again.
8/15 105pm
Tested positive for HLH / MAS.
Treating with anakinra and now adding steroids and insulin. So add steroids and insulin to the list on the last post.
I like how Terri said it: Everything that they treat has a side-effect that then has to be treated. And this is happening now. A biological bureaucracy.
Treating with anakinra and now adding steroids and insulin. So add steroids and insulin to the list on the last post.
I like how Terri said it: Everything that they treat has a side-effect that then has to be treated. And this is happening now. A biological bureaucracy.
8/15 9:30am
Tough coming in this morning and seeing my son. More tubes and more machines. So this is what they've got going into him from various bags (I do not know what they all do just yet):
fentanyl
versed
milrinone
norepinephrine
albumin
TPN
lipids
heparin
doxycycline
vancomycin
anakinara
gentamicin
I do know that some of the abovementioned meds are related to the fact that, during the early hours, Willem went into shock.
He is doing very well on the intake and output balance; i.e. fluids are going in and out properly -- something they were having trouble with before. He is producing more urine and his poo is looking a lot more like poo.
Willem opened his eyes briefly and I got to tell him I love him and he went back to sleep.
He is still running a fever but this is to be expected; well, I expect it -- he is, after all, fighting an infection.
In a few minutes there will be a blood marrow test to test for the HLH.
'Discussed Occam's Razor with the nurse and we agree that, as Occam's Razor suggests, with all of the competing hypothesis, the simplest one is probably the truth; i.e. he's fighting a terrible virus, nothing more, and only time and support will fix him.
The book Blink has been discussed a lot lately as well. Thank you SSG Schinsky.
Just got labs back that support Macrophage Activation Syndrome (MAS) brought on by the gastroenteritis. I am being told, at this very moment, that there is a dramatic reversal of the inflammation expected within a few days of giving him the medicine that addresses MAS.
I am leery of hope but here, now, is some hope.
The infectious agent? They do think that it is indeed the Tyhphoidal Tularemia.
fentanyl
versed
milrinone
norepinephrine
albumin
TPN
lipids
heparin
doxycycline
vancomycin
anakinara
gentamicin
I do know that some of the abovementioned meds are related to the fact that, during the early hours, Willem went into shock.
He is doing very well on the intake and output balance; i.e. fluids are going in and out properly -- something they were having trouble with before. He is producing more urine and his poo is looking a lot more like poo.
Willem opened his eyes briefly and I got to tell him I love him and he went back to sleep.
He is still running a fever but this is to be expected; well, I expect it -- he is, after all, fighting an infection.
In a few minutes there will be a blood marrow test to test for the HLH.
'Discussed Occam's Razor with the nurse and we agree that, as Occam's Razor suggests, with all of the competing hypothesis, the simplest one is probably the truth; i.e. he's fighting a terrible virus, nothing more, and only time and support will fix him.
The book Blink has been discussed a lot lately as well. Thank you SSG Schinsky.
Just got labs back that support Macrophage Activation Syndrome (MAS) brought on by the gastroenteritis. I am being told, at this very moment, that there is a dramatic reversal of the inflammation expected within a few days of giving him the medicine that addresses MAS.
I am leery of hope but here, now, is some hope.
The infectious agent? They do think that it is indeed the Tyhphoidal Tularemia.
Sunday, August 14, 2011
8/14 - 659pm
Tomorrow will be a bone marrow test and a dedicated line will be added to Willem to add medication that controls his blood pressure. Another doctor is now thinking HLH. You'll have to google it because I haven't even looked it up yet. I am wearing down and at my wits end. Still having trouble finding hope.
Thank you David and thank you Katie for your insight. I will now be researching mitochondrial disease and HLH.
Thank you David and thank you Katie for your insight. I will now be researching mitochondrial disease and HLH.
08/14 - 1147am
Still being ventilated. Vitals are strong and, apart from his entire GI, his organs are getting better. Willem is extremely strong and stoic.
The scope found that there are red spots in his stomach that are unfamiliar but malignancy was mentioned. There are a couple large -- I can't think of any other word than "bubbles" in his stomach also of unknown type. Willem's entire colon is infected, inflamed and, unfortunately necrotic.
We have been assured that there is plenty of hope as his brain, heart, liver, and kidneys are strong; his lungs need some help yet but with all that doing well he can still fight and recover from this.
Willem will remain on ventilation and sedated for a little while longer as it is helping him rest. He will be sedated only enough to stay sleeping but will be able to respond, physically, to external stimuli e.g. a finger pull, etc.
We are hopeful. Thank you all for your prayers and concern -- you have been a great help to us.
The scope found that there are red spots in his stomach that are unfamiliar but malignancy was mentioned. There are a couple large -- I can't think of any other word than "bubbles" in his stomach also of unknown type. Willem's entire colon is infected, inflamed and, unfortunately necrotic.
We have been assured that there is plenty of hope as his brain, heart, liver, and kidneys are strong; his lungs need some help yet but with all that doing well he can still fight and recover from this.
Willem will remain on ventilation and sedated for a little while longer as it is helping him rest. He will be sedated only enough to stay sleeping but will be able to respond, physically, to external stimuli e.g. a finger pull, etc.
We are hopeful. Thank you all for your prayers and concern -- you have been a great help to us.
Willem's Status as of 08/14 900am
******HAPPY BIRTHDAY WILLEM******
Willem was put on a ventalator this morning after finding that he was having a very difficult time breathing. Doctors have also put a drain in his abdomen to drain excess fluids - to relieve pressure - and may have to do the same to his chest. They've drained a half of a litre out of him thus far but are leary of draining more.
Willem is currently having a colonoscopy done so they can do a biopsy. A lot of hope is being placed in being able to study that tissue sample.
Willem's vitals are fine and he is still very strong. They've given him morphine for pain.
He is anxious to have cake and open presents.
Willem was put on a ventalator this morning after finding that he was having a very difficult time breathing. Doctors have also put a drain in his abdomen to drain excess fluids - to relieve pressure - and may have to do the same to his chest. They've drained a half of a litre out of him thus far but are leary of draining more.
Willem is currently having a colonoscopy done so they can do a biopsy. A lot of hope is being placed in being able to study that tissue sample.
Willem's vitals are fine and he is still very strong. They've given him morphine for pain.
He is anxious to have cake and open presents.
Saturday, August 13, 2011
Willem's Status as of 08/13 7:30pm
Originally the Infectious Diseases specialist diagnosed Willem with Typhoidal Tularemia and ordered that he be put on antibiotics right away (he was off the antibiotics because it was determined that his illness was viral). He has a PICC in his arm where he is receiving proteins, lipids, vitamins, antibiotics, and albumin. He is on oxygen and has a catheter. He no longer has to get out of bed to urinate or have a movement.
He has been, and is currently "third spacing" which means that all of the fluid they're putting in to him is, through an osmotic imbalance, I believe, (leaking) into the cavity spaces around his organs and making breathing difficult and certain positions painful.
Willem's liver is enlarged and his enzyme and bilirubin levels are up. Willem had an ultrasound in the early hours of this morning on his neck, kidneys, liver, and his heart. There was some talk of having the hospital take over his breathing which means intubating and hooking him up to a breathing machine but, fortunately, that has not happened and will, hopefully, not happen.
Because of the gross inflammation of his intestines he is scheduled for a lower GI scope in the morning to include a biopsy. The doctors are hopeful that the biopsy will help them understand what is happening to him.
Overall, today, Willem is in good spirits and was alert enough to assemble his Lego Bionical.
Nurse just came in to inform me that Willem will be getting several xrays of his upper and lower abdomen to search for air in the free spaces.
He has been, and is currently "third spacing" which means that all of the fluid they're putting in to him is, through an osmotic imbalance, I believe, (leaking) into the cavity spaces around his organs and making breathing difficult and certain positions painful.
Willem's liver is enlarged and his enzyme and bilirubin levels are up. Willem had an ultrasound in the early hours of this morning on his neck, kidneys, liver, and his heart. There was some talk of having the hospital take over his breathing which means intubating and hooking him up to a breathing machine but, fortunately, that has not happened and will, hopefully, not happen.
Because of the gross inflammation of his intestines he is scheduled for a lower GI scope in the morning to include a biopsy. The doctors are hopeful that the biopsy will help them understand what is happening to him.
Overall, today, Willem is in good spirits and was alert enough to assemble his Lego Bionical.
Nurse just came in to inform me that Willem will be getting several xrays of his upper and lower abdomen to search for air in the free spaces.
ReCap
On Saturday 7/30/2011, in the evening, Willem complained that his arms and legs were achy. By 7/31 he was running a fever of 103 plus. He was taken to his doctor on Wednesday, August 3, and by the time he got home he was throwing up and having diarrhea -- usually simultaneously. This was his routine every day and all day.
I left work on Sunday, August 7, to take him to Metro Hospital ER. At the ER it was found that he was seriously dehydrated -- his potassium levels and electrolytes were alarmingly low and he was given an IV and admitted to the hospital. His condition worsened at Metro and the resident pediatrician found himself at a complete loss.
On Tuesday, by pure chance, the doctor saw that Willem's tonsils were huge and white and was elated thinking that he had found the solution and immediately put Willem on antibiotics. By Wednesday, August 10, Willem's condition worsened and was unresponsive to the antibiotics. The doctor appeared worried and purplexed and recommended he be transferred to Helen DeVos Children's Hospital.
Upon arrival to HDCH an immediate difference in care could be observed. There were three doctors in Willems room before Willem even got there and they were all versed in his condition. Some of the findings by the Metro doctor were immediately ruled out and his care was upgraded and changed all for the better.
I left work on Sunday, August 7, to take him to Metro Hospital ER. At the ER it was found that he was seriously dehydrated -- his potassium levels and electrolytes were alarmingly low and he was given an IV and admitted to the hospital. His condition worsened at Metro and the resident pediatrician found himself at a complete loss.
On Tuesday, by pure chance, the doctor saw that Willem's tonsils were huge and white and was elated thinking that he had found the solution and immediately put Willem on antibiotics. By Wednesday, August 10, Willem's condition worsened and was unresponsive to the antibiotics. The doctor appeared worried and purplexed and recommended he be transferred to Helen DeVos Children's Hospital.
Upon arrival to HDCH an immediate difference in care could be observed. There were three doctors in Willems room before Willem even got there and they were all versed in his condition. Some of the findings by the Metro doctor were immediately ruled out and his care was upgraded and changed all for the better.
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