Day +75
EVENING UPDATE
While Max's day and evening yesterday were very stable, his overnight was rough. He began to have low blood pressure at around 5am and his oxygen needs on the oscillator went up at around 2:30am. Neither really rebounded and he sent the doctors and nurses scrambling for answers.
Now it's around 5pm and we just had two very important conferences. The first was with the team of transplant doctors who told us they're doing all they can for Max, but because of many factors, they can do no more at this time, and here's why: He is retaining fluid but can't make it to dialysis because his breathing is not stable on the oscillator and therefore can not be transported to surgery. Additionally he is not oxygenating throughout his body very well. This could be because of the bleeding that happened in his lungs, a virus in his guts, or a number of other things. He may be septic as well since he's having trouble with low blood pressure. The biggest mystery of all is the graft vs host disease. It's affect on all of his systems is hard to guage and so far it's been impossible to conquer. They were clear with us: Max needs to make dramatic progress overnight or the options become more difficult, the risks become very great for all procedures, and death is very likely for any number of reasons. They don't seem very hopeful and that's because they are just being honest. It's hard to see the doctors so frustrated and we know in our hearts that when they tell us there is nothing more to do it is going to be hard for them too. Everyone here has been working so hard, especially Max, and it's heartbreaking to say the least to think about all the effort that has gone into saving our son, and that it might soon be over.
The second conference we had was with Grace to tell her that her brother could die and that this might be her last night with him. We cried more than her, but she still was very sad and said "I don't want him to die" and we told her that's why she should spend some time with him and sit with him. She told us she would do that "after I finish my chips." We told her that we would have to go back to Illinois and be in our house without him and she cried again. We don't think she really understands, and that's OK. We just wanted her to be a little more prepared.
Margaret's Mom and sister Katie are coming in very late tonight so between them and my Mom we should be able to be together at the hospital for whatever happens.
Please pray for a peaceful night, whatever the outcome. Max is the bravest person we know. And we miss him so much.
--Mike & Margaret
While Max's day and evening yesterday were very stable, his overnight was rough. He began to have low blood pressure at around 5am and his oxygen needs on the oscillator went up at around 2:30am. Neither really rebounded and he sent the doctors and nurses scrambling for answers.
Now it's around 5pm and we just had two very important conferences. The first was with the team of transplant doctors who told us they're doing all they can for Max, but because of many factors, they can do no more at this time, and here's why: He is retaining fluid but can't make it to dialysis because his breathing is not stable on the oscillator and therefore can not be transported to surgery. Additionally he is not oxygenating throughout his body very well. This could be because of the bleeding that happened in his lungs, a virus in his guts, or a number of other things. He may be septic as well since he's having trouble with low blood pressure. The biggest mystery of all is the graft vs host disease. It's affect on all of his systems is hard to guage and so far it's been impossible to conquer. They were clear with us: Max needs to make dramatic progress overnight or the options become more difficult, the risks become very great for all procedures, and death is very likely for any number of reasons. They don't seem very hopeful and that's because they are just being honest. It's hard to see the doctors so frustrated and we know in our hearts that when they tell us there is nothing more to do it is going to be hard for them too. Everyone here has been working so hard, especially Max, and it's heartbreaking to say the least to think about all the effort that has gone into saving our son, and that it might soon be over.
The second conference we had was with Grace to tell her that her brother could die and that this might be her last night with him. We cried more than her, but she still was very sad and said "I don't want him to die" and we told her that's why she should spend some time with him and sit with him. She told us she would do that "after I finish my chips." We told her that we would have to go back to Illinois and be in our house without him and she cried again. We don't think she really understands, and that's OK. We just wanted her to be a little more prepared.
Margaret's Mom and sister Katie are coming in very late tonight so between them and my Mom we should be able to be together at the hospital for whatever happens.
Please pray for a peaceful night, whatever the outcome. Max is the bravest person we know. And we miss him so much.
--Mike & Margaret
posted by Mike Ciacciarelli
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