Day +76
LATE EVENING UPDATE
Max didn't make any significant progress today. The relative success of last night was mostly maintained, but he has needed a little more oxygen this afternoon than last night.
Some good things: He is urinating more, almost as much as is going in him. He doesn't have the low blood pressure associated with sepsis. He was surrounded by much love today, with so many members of our family making last-minute trips to see him.
Some not-so-good things: He is still on high settings on the oscillator, and the process of moving back to a regular ventilator seems far away. He had an ultrasound today and it showed that his bowel is extremely distended. If it's his graft vs. host disease, we can only hope that the medicines begin to work otherwise it may have just shut down. He is very very sensitive to touch and may be in more pain. His blood pressure and heart rate increase with anyone touching his skin so they more than doubled his narcotic.
Max isn't quitting. And the question we have is why? He must be so uncomfortable. But he's clinging to all the love that he's getting from us and from so many kind words and deeds on his behalf. The doctors have prepared us for the worst, and we've decided to take our cues from him. When he's ready to stop, we will try as much as we can to have it be as peaceful and gentle as possible. Until then, we will work on his behalf to help him get the best care he can.
Today he squeezed our fingers a little bit more and he even had one small stool. This isn't much, but for Max, as sick as he is, it takes tremendous effort. I wish I could paint an accurate picture of how much Max has been put through. We counted his meds today and he is on 27 different medicines, plus 6 drips. He gets over 55 infusions of something per day.
Our emotions are up and down. His health seems so fragile. When one stops to add up all the hurdles he must overcome to get better it seems impossible. But there is a sequence to it, an order, and step one is to just maintain his breathing on this machine so his lungs can heal and his graft vs. host medicine can work on his cells. We've tried hard to understand why his new cells don't like their new home. Who wouldn't love this beautiful boy?
Hoping again for a peaceful night, stronger lungs, and happier cells,
Mike & Margaret
_________________________________
MORNING UPDATE
Our son has made it through the night. We had come back in the room after our talks with the doctor and we looked at the oxygen saturation and said, "Is that 87%?" and the nurse said, "No, 97%." That little fighter. He had one more night of fight and we'll see how much more he has. Maybe yesterday's problems were related to another small lung bleed overnight and it took the rest of the day to recover. We don't know. They were able to turn down his oxygen needs a little bit and while he's not much closer to being able to switch vents and have surgery, he did make progress. The resident said she was "very very very very worried" but she was ready to take one of the "very"'s away.
We have been reading the guestbook entries and we really appreciate the support.
At this time we have to say thank you to the resident Judy and the fellow Eric who both finished their month-long rotation yesterday. Thank you for making our son's life so important to you and for taking good care of us as well. Thank you for pushing for things and for questioning things and for not giving up. Special thanks also to the team of nurses yesterday, it wasn't an easy assignment, but we got great care.
Hoping for a better day,
Mike & Margaret
Max didn't make any significant progress today. The relative success of last night was mostly maintained, but he has needed a little more oxygen this afternoon than last night.
Some good things: He is urinating more, almost as much as is going in him. He doesn't have the low blood pressure associated with sepsis. He was surrounded by much love today, with so many members of our family making last-minute trips to see him.
Some not-so-good things: He is still on high settings on the oscillator, and the process of moving back to a regular ventilator seems far away. He had an ultrasound today and it showed that his bowel is extremely distended. If it's his graft vs. host disease, we can only hope that the medicines begin to work otherwise it may have just shut down. He is very very sensitive to touch and may be in more pain. His blood pressure and heart rate increase with anyone touching his skin so they more than doubled his narcotic.
Max isn't quitting. And the question we have is why? He must be so uncomfortable. But he's clinging to all the love that he's getting from us and from so many kind words and deeds on his behalf. The doctors have prepared us for the worst, and we've decided to take our cues from him. When he's ready to stop, we will try as much as we can to have it be as peaceful and gentle as possible. Until then, we will work on his behalf to help him get the best care he can.
Today he squeezed our fingers a little bit more and he even had one small stool. This isn't much, but for Max, as sick as he is, it takes tremendous effort. I wish I could paint an accurate picture of how much Max has been put through. We counted his meds today and he is on 27 different medicines, plus 6 drips. He gets over 55 infusions of something per day.
Our emotions are up and down. His health seems so fragile. When one stops to add up all the hurdles he must overcome to get better it seems impossible. But there is a sequence to it, an order, and step one is to just maintain his breathing on this machine so his lungs can heal and his graft vs. host medicine can work on his cells. We've tried hard to understand why his new cells don't like their new home. Who wouldn't love this beautiful boy?
Hoping again for a peaceful night, stronger lungs, and happier cells,
Mike & Margaret
_________________________________
MORNING UPDATE
Our son has made it through the night. We had come back in the room after our talks with the doctor and we looked at the oxygen saturation and said, "Is that 87%?" and the nurse said, "No, 97%." That little fighter. He had one more night of fight and we'll see how much more he has. Maybe yesterday's problems were related to another small lung bleed overnight and it took the rest of the day to recover. We don't know. They were able to turn down his oxygen needs a little bit and while he's not much closer to being able to switch vents and have surgery, he did make progress. The resident said she was "very very very very worried" but she was ready to take one of the "very"'s away.
We have been reading the guestbook entries and we really appreciate the support.
At this time we have to say thank you to the resident Judy and the fellow Eric who both finished their month-long rotation yesterday. Thank you for making our son's life so important to you and for taking good care of us as well. Thank you for pushing for things and for questioning things and for not giving up. Special thanks also to the team of nurses yesterday, it wasn't an easy assignment, but we got great care.
Hoping for a better day,
Mike & Margaret
posted by Mike Ciacciarelli
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