Day +77
Max made a little progress with his kidneys. He's finally beginning to push more urine out and for a time today actually got rid of more fluid than he was given. The biggest problem is that a large amount of fluid is in his bowel -- his beat-up graft-vs-host bowel, and it just needs to hold out while his kidneys slowly help him take off the extra fluid. It's just that his bowel is so unhealthy that the worry is that a perforation could happen and if so, surgery will not help him, he will be too sick to heal. One step at a time. They also made a small adjustment on the oscillator today for the first time since Tuesday. So that's good too.
Tonight a surgeon came by and talked to us. His line was "I'm afraid what I have to say won't be very comforting to you." He told us that if Max's symptoms were in one of us, we would be on the operating table. And he told us that Max's bowel is possibly "asleep" and in danger of totally clogging up. But Max's graft-vs-host disease, combined with his lung issues, and transplant in general make him a very complicated boy. He explained that there are no real surgical options for Max if he has perforated his bowel and that he wouldn't make it to surgery anyway. He did put in a bigger tube to help suck up some of the bile and fluid from the stomach and small intestine. He thinks it's one thing he can do to help the distension without surgery.
Sadly we must also report that Grace's buddy Kendall lost her fight with leukemia yesterday morning. As most people know, her family had been extremely helpful to us and we are so lucky to have met Kendall and for our daughter to have such a good friend to look up to. We miss her and her family so much, but we know that Kendall is at peace and that her family was able to surround her with as much love as possible in her last days. Please pray for her family to find the joy of her memory to ease the pain of her loss. Their pain is unimaginable even as frightened as we are for Max. Just a couple of days ago RMH gave us the Christmas cards they produced with Grace and Kendall's picture on them. It seems like it was a lifetime ago that they posed for that photo.
Today we received a note from a friend of our neighbor Jodie. This family, from Michigan, has never met us but their daughter was born with many severe birth defects. The head of pediatrics at the hospital gave them a button that reads "I Believe In Miracles" and she wore it every day. Jodie has told us often of this little champion, her name is Sophie and today she is 3 and doing much better. She and her family endured the same kinds of fear as us when she was born. They sent us the button that Sophie wore and now Max is wearing it. We pinned it to a Halloween sweatshirt that we had to cut open so we could wrap it around his chest and arms. Max looks amazing. He's been in hospital-issue blue shirts for the last 2 months and since the recent events, he's basically been nude. So a little change of clothes puts us in the Halloween spirit and the button has given us a bit of hope.
We hung up some get-well posters that my Aunt Lois's Girl Scout troop made for Max. And we hung some Halloween decorations in the window. We love Halloween so much and we miss being able to decorate our house and going trick-or-treating down the block. But we've tried today to make the best of this situation and it's gone a long way towards improving our spirits.
Please think about Max's little button and what it says. This button already helped one little girl and we're hoping that it'll change our luck. The doctors are still very cautious about Max but he seems to have surprised them a little bit by restarting his kidneys a bit today.
We are really hoping for a quiet night and quiet day tomorrow so that we can attend the RMH Halloween party with Grace tomorrow. She looks so pretty in her Belle costume (thanks again Gretchen and Katie) and you can tell she feels pretty when she wears it. Grannie and Grandma will be Max sitting while we attend with Auntie Peeps and Auntie Katie.
Good night to all and have a Happy Halloween,
Margaret & Mike
Tonight a surgeon came by and talked to us. His line was "I'm afraid what I have to say won't be very comforting to you." He told us that if Max's symptoms were in one of us, we would be on the operating table. And he told us that Max's bowel is possibly "asleep" and in danger of totally clogging up. But Max's graft-vs-host disease, combined with his lung issues, and transplant in general make him a very complicated boy. He explained that there are no real surgical options for Max if he has perforated his bowel and that he wouldn't make it to surgery anyway. He did put in a bigger tube to help suck up some of the bile and fluid from the stomach and small intestine. He thinks it's one thing he can do to help the distension without surgery.
Sadly we must also report that Grace's buddy Kendall lost her fight with leukemia yesterday morning. As most people know, her family had been extremely helpful to us and we are so lucky to have met Kendall and for our daughter to have such a good friend to look up to. We miss her and her family so much, but we know that Kendall is at peace and that her family was able to surround her with as much love as possible in her last days. Please pray for her family to find the joy of her memory to ease the pain of her loss. Their pain is unimaginable even as frightened as we are for Max. Just a couple of days ago RMH gave us the Christmas cards they produced with Grace and Kendall's picture on them. It seems like it was a lifetime ago that they posed for that photo.
Today we received a note from a friend of our neighbor Jodie. This family, from Michigan, has never met us but their daughter was born with many severe birth defects. The head of pediatrics at the hospital gave them a button that reads "I Believe In Miracles" and she wore it every day. Jodie has told us often of this little champion, her name is Sophie and today she is 3 and doing much better. She and her family endured the same kinds of fear as us when she was born. They sent us the button that Sophie wore and now Max is wearing it. We pinned it to a Halloween sweatshirt that we had to cut open so we could wrap it around his chest and arms. Max looks amazing. He's been in hospital-issue blue shirts for the last 2 months and since the recent events, he's basically been nude. So a little change of clothes puts us in the Halloween spirit and the button has given us a bit of hope.
We hung up some get-well posters that my Aunt Lois's Girl Scout troop made for Max. And we hung some Halloween decorations in the window. We love Halloween so much and we miss being able to decorate our house and going trick-or-treating down the block. But we've tried today to make the best of this situation and it's gone a long way towards improving our spirits.
Please think about Max's little button and what it says. This button already helped one little girl and we're hoping that it'll change our luck. The doctors are still very cautious about Max but he seems to have surprised them a little bit by restarting his kidneys a bit today.
We are really hoping for a quiet night and quiet day tomorrow so that we can attend the RMH Halloween party with Grace tomorrow. She looks so pretty in her Belle costume (thanks again Gretchen and Katie) and you can tell she feels pretty when she wears it. Grannie and Grandma will be Max sitting while we attend with Auntie Peeps and Auntie Katie.
Good night to all and have a Happy Halloween,
Margaret & Mike
posted by Mike Ciacciarelli
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