Day +92 - Let the Juicing Begin
WBC 3.4
Max came through surgery like a champ. But of course, that's exactly what he is. We are so proud of our guy! It's an unbelievable scene, to transport such a sick little guy to surgery. It involves taking him in his bed, his IV pole, his heartrate/BP/saturation monitor, his ventilator, and his nitrous oxide machine, all at the same time. It took about 6 people, with us trailing behind. When we got to the surgical floor we had to say goodbye and our hearts were breaking. We had to go to the recovery room. It's the same room we were in before Max had his first line put in (and all of his other pre-transplant stuff done). Back in late July, the last time we were waiting for results, we were starting with a much healthier kid. It seems like a lifetime ago. The surgeon came out after about an hour, and told us everything went well, and that the dialysis catheter was fed into his heart without any trouble. We came back up to the room to wait for him, and he arrived soon after in a big bed! Margaret had requested a bigger bed to allow us to be able to sit or lay next to him. The crib certainly took up less room, but it has been hard to feel very close to our little guy. We still can't hold him or move him to much because of the ventilator, but it will be nice to be able to be right up next to him.
At around 1:45pm they began juicing him with dialysis. They hope to take a kilo off today and they will be back in the morning. The blood comes out of Max and is passed through a series of filters and gets put back in. Once it's back inside Max, it will be carrying less waste and some of the fluid still in his tissues can be drawn back into the bloodstream and be filtered out. There are many risks, including a need for permanent dialysis, but the hope is that Max will be more stabile from a fluid standpoint in a few weeks. So far it's only been about a half hour, but he seems to be tolerating things well. The dialysis doctor is pleased.
He is still fighting so hard to live. He is so patient. He is just fighting along hoping the doctors can figure out a way to heal his lungs and beat his GVHD. What a good, good boy. WE LOVE YOU MAX!
We have also heard that he fundraiser called Labor of Love in Park Ridge, IL, was a tremendous success in Max's honor. Maybe all that goodwill is what gave him his strength today. Thank you to all who attended, and especially to Mary Beth Micucci for nominating Max and for helping to organize such a terrific event. Thanks also to Aunt Nancy and Grandma Chick for watching Grace today so we could both be with Max.
We don't know how much more Max can take, or how much more the doctors can do, but he sure is trying. He is inspiring so many people, and we are so very proud of him.
--Mike & Margaret
Max came through surgery like a champ. But of course, that's exactly what he is. We are so proud of our guy! It's an unbelievable scene, to transport such a sick little guy to surgery. It involves taking him in his bed, his IV pole, his heartrate/BP/saturation monitor, his ventilator, and his nitrous oxide machine, all at the same time. It took about 6 people, with us trailing behind. When we got to the surgical floor we had to say goodbye and our hearts were breaking. We had to go to the recovery room. It's the same room we were in before Max had his first line put in (and all of his other pre-transplant stuff done). Back in late July, the last time we were waiting for results, we were starting with a much healthier kid. It seems like a lifetime ago. The surgeon came out after about an hour, and told us everything went well, and that the dialysis catheter was fed into his heart without any trouble. We came back up to the room to wait for him, and he arrived soon after in a big bed! Margaret had requested a bigger bed to allow us to be able to sit or lay next to him. The crib certainly took up less room, but it has been hard to feel very close to our little guy. We still can't hold him or move him to much because of the ventilator, but it will be nice to be able to be right up next to him.
At around 1:45pm they began juicing him with dialysis. They hope to take a kilo off today and they will be back in the morning. The blood comes out of Max and is passed through a series of filters and gets put back in. Once it's back inside Max, it will be carrying less waste and some of the fluid still in his tissues can be drawn back into the bloodstream and be filtered out. There are many risks, including a need for permanent dialysis, but the hope is that Max will be more stabile from a fluid standpoint in a few weeks. So far it's only been about a half hour, but he seems to be tolerating things well. The dialysis doctor is pleased.
He is still fighting so hard to live. He is so patient. He is just fighting along hoping the doctors can figure out a way to heal his lungs and beat his GVHD. What a good, good boy. WE LOVE YOU MAX!
We have also heard that he fundraiser called Labor of Love in Park Ridge, IL, was a tremendous success in Max's honor. Maybe all that goodwill is what gave him his strength today. Thank you to all who attended, and especially to Mary Beth Micucci for nominating Max and for helping to organize such a terrific event. Thanks also to Aunt Nancy and Grandma Chick for watching Grace today so we could both be with Max.
We don't know how much more Max can take, or how much more the doctors can do, but he sure is trying. He is inspiring so many people, and we are so very proud of him.
--Mike & Margaret
posted by Mike Ciacciarelli
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