Day +97
WBC 8.4
While no one here is convinced yet that there is no more hope for our son, there are a lot of concerns regarding the "what if" part of the equation. And there isn't really much of a point in trying to not type the words since we're worried that Max is going to die every hour of every day. So here it goes: The possibility that Max's problems are unrecoverable increase every day he does not get better. There is a very real chance that he may never get off a ventilator. And there is the very real chance that he has unbeatable graft vs host disease. These two problems have been holding hands since Max got his new cells. The lungs are, however, the main issue. This is his fourth ventilation, and it has lasted almost a month. During this time he has been put on and off an oscillator and has had multiple lung bleeds and infections. The damage to this fragile part of the body is great. So great, in fact that he may never recover. This is probably why even after getting all the extra fluid off his body they don't sound much better, and he's not having the best blood gases. When I asked the doctor directly if I thought he could get off the vent, he said, "the odds are against it." Well, that's our Max.
None of this is news to us and we want most of all to consider Max's best interest. The doctor today spoke of Max's recent blood pressure issues (now amazingly high AND low at times) and thought we could begin to have conversations about whether or not we would want compressions (CPR) should Max's blood pressure bottom out. In other words, we may soon be having conversations regarding the difficult life or death decisions that parents of terminally ill children have to make. In addition, Margaret talked to the child-life specialist today about how to talk to Grace about her brother should he die. I also spoke to the head daytime nurse to try and make sure we are always given a nurse that knows us and knows Max because it could make a huge difference in respect and dignity should that time come. And that word is key, dignity. We don't want Max to suffer any more than he has to and we don't want his body to be damaged any more than is necessary. But we also don't want to be put in that position, so our primary hope is that Max begins to recover or shows a path that we can follow with confidence of his best interests.
Our hearts are broken, but our hopes remain. They have not given us the same speech that they gave three weeks ago, but it's been clear Max is not making much progress. We are trying to be realistically hopeful, if that's possible. He is still inside of his very beaten-up body. We've seen him trying to blink or raise a fist lately and we believe that he still wants to fight and wants us to fight for him. It's amazing that with all the technology, all of the x-rays and CT scans, the doctors still don't see what we can see - Max's giant heart.
Thank you everyone for the recent notes and kind words. We appreciate it so much. Please continue to pray for us, and all of the very sick children in hospitals today.
--mike
While no one here is convinced yet that there is no more hope for our son, there are a lot of concerns regarding the "what if" part of the equation. And there isn't really much of a point in trying to not type the words since we're worried that Max is going to die every hour of every day. So here it goes: The possibility that Max's problems are unrecoverable increase every day he does not get better. There is a very real chance that he may never get off a ventilator. And there is the very real chance that he has unbeatable graft vs host disease. These two problems have been holding hands since Max got his new cells. The lungs are, however, the main issue. This is his fourth ventilation, and it has lasted almost a month. During this time he has been put on and off an oscillator and has had multiple lung bleeds and infections. The damage to this fragile part of the body is great. So great, in fact that he may never recover. This is probably why even after getting all the extra fluid off his body they don't sound much better, and he's not having the best blood gases. When I asked the doctor directly if I thought he could get off the vent, he said, "the odds are against it." Well, that's our Max.
None of this is news to us and we want most of all to consider Max's best interest. The doctor today spoke of Max's recent blood pressure issues (now amazingly high AND low at times) and thought we could begin to have conversations about whether or not we would want compressions (CPR) should Max's blood pressure bottom out. In other words, we may soon be having conversations regarding the difficult life or death decisions that parents of terminally ill children have to make. In addition, Margaret talked to the child-life specialist today about how to talk to Grace about her brother should he die. I also spoke to the head daytime nurse to try and make sure we are always given a nurse that knows us and knows Max because it could make a huge difference in respect and dignity should that time come. And that word is key, dignity. We don't want Max to suffer any more than he has to and we don't want his body to be damaged any more than is necessary. But we also don't want to be put in that position, so our primary hope is that Max begins to recover or shows a path that we can follow with confidence of his best interests.
Our hearts are broken, but our hopes remain. They have not given us the same speech that they gave three weeks ago, but it's been clear Max is not making much progress. We are trying to be realistically hopeful, if that's possible. He is still inside of his very beaten-up body. We've seen him trying to blink or raise a fist lately and we believe that he still wants to fight and wants us to fight for him. It's amazing that with all the technology, all of the x-rays and CT scans, the doctors still don't see what we can see - Max's giant heart.
Thank you everyone for the recent notes and kind words. We appreciate it so much. Please continue to pray for us, and all of the very sick children in hospitals today.
--mike
posted by Mike Ciacciarelli
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