Day +52
Mid-morning update
It is with sad hearts that we report Max was put back on the ventilator for the third time at about 11:15 today. This is what nobody wanted. Please continue to root for Max. Hopefully they will learn more about his lungs and his airway during this time. Special thanks to all the people at the hospital who worked so hard (especially Max himself!) to keep this from happening for so long.
--mike & margaret
WBC 6.7
Saturday was another very tough day off the vent. And last night was even tougher. This morning they told me that Max needed to go back on the vent. It's 8am now and it hasn't happened yet, but here's the story so far:
Max had been struggling. He'd been working very hard, at least as hard at times as when he was put on the vent before. But, his blood gases still looked good and his respiration rate was not high for long. He sounded terrible though. He was wheezing nonstop, and noisy. You didn't need a stethoscope to hear the effort. His expirations were much longer than his inspirations, indicating wheezing as well. Overnight, however, Max's blood gases weren't as good. He was retaining too much carbon dioxide, and was not exchanging oxygen as well. The ICU attending came in to help care for another patient in distress and felt that it was again time for Max to be intubated.
We're thankful that they've been giving Max a chance to beat this. On Friday, pulminology told us that the need for intubation was imminent. Then ICU told us that we could wait a bit and let the meds work. Then they came back at night and the ICU doc sort of shrugged and said it was time. But he has made it another day and two more nights so that is pretty good. He's on all the medication he can get for this wheezing and the high-dose steroids should have helped. But most people (nurses, RTs, docs) feel like there's not much more they can do and he's really not getting better, just holding his own. Either he'll improve, they say, or he'll tire out and be put on the vent. They feel that if nothing else, he'll be more "comfortable" (a word that's sounding less and less encouraging). So the threat of the vent is real and is happening on an hourly basis or so. It is something that everybody seemingly wants to do and wants to avoid.
If Max does get put back on the vent, we will feel deeply saddened by this situation. We have been told that going back on a vent a third time would be a "major setback" and there's no way to shake those words out of our heads. Since they don't have an answer as to why Max is wheezing and having such a hard time breathing on his own, it's hard to feel confident that even if he is able to get off the vent again, he'll be able to stay off. But that's what we have to hope. Still, our hearts will be broken again.
Grannie left yesterday and Grandma Chick arrived. So Grace went from one Grannie to the next for a buddy to play with. We don't know what we would have done during this latest stress period without this help. So once again, thanks to our Moms for being so great.
Breathe Max Breathe!
Mike
It is with sad hearts that we report Max was put back on the ventilator for the third time at about 11:15 today. This is what nobody wanted. Please continue to root for Max. Hopefully they will learn more about his lungs and his airway during this time. Special thanks to all the people at the hospital who worked so hard (especially Max himself!) to keep this from happening for so long.
--mike & margaret
WBC 6.7
Saturday was another very tough day off the vent. And last night was even tougher. This morning they told me that Max needed to go back on the vent. It's 8am now and it hasn't happened yet, but here's the story so far:
Max had been struggling. He'd been working very hard, at least as hard at times as when he was put on the vent before. But, his blood gases still looked good and his respiration rate was not high for long. He sounded terrible though. He was wheezing nonstop, and noisy. You didn't need a stethoscope to hear the effort. His expirations were much longer than his inspirations, indicating wheezing as well. Overnight, however, Max's blood gases weren't as good. He was retaining too much carbon dioxide, and was not exchanging oxygen as well. The ICU attending came in to help care for another patient in distress and felt that it was again time for Max to be intubated.
We're thankful that they've been giving Max a chance to beat this. On Friday, pulminology told us that the need for intubation was imminent. Then ICU told us that we could wait a bit and let the meds work. Then they came back at night and the ICU doc sort of shrugged and said it was time. But he has made it another day and two more nights so that is pretty good. He's on all the medication he can get for this wheezing and the high-dose steroids should have helped. But most people (nurses, RTs, docs) feel like there's not much more they can do and he's really not getting better, just holding his own. Either he'll improve, they say, or he'll tire out and be put on the vent. They feel that if nothing else, he'll be more "comfortable" (a word that's sounding less and less encouraging). So the threat of the vent is real and is happening on an hourly basis or so. It is something that everybody seemingly wants to do and wants to avoid.
If Max does get put back on the vent, we will feel deeply saddened by this situation. We have been told that going back on a vent a third time would be a "major setback" and there's no way to shake those words out of our heads. Since they don't have an answer as to why Max is wheezing and having such a hard time breathing on his own, it's hard to feel confident that even if he is able to get off the vent again, he'll be able to stay off. But that's what we have to hope. Still, our hearts will be broken again.
Grannie left yesterday and Grandma Chick arrived. So Grace went from one Grannie to the next for a buddy to play with. We don't know what we would have done during this latest stress period without this help. So once again, thanks to our Moms for being so great.
Breathe Max Breathe!
Mike
posted by Mike Ciacciarelli
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