Day +90
WBC 2.9
Tonight we had some stress. Max's breathing seemed to be heavier on the vent. We've seen Max work hard to breathe before and the ventilator has always taken care of the problem. So to hear wheezing going on in his lungs while the ventilator is working is very distressing. What is causing this problem? As usual when it comes to Max's lungs, no one is sure. One thing that is certain, is that his weight loss has stopped. Of the 5 kilos gained, only a little less than 2 were lost. Then we started the three new meds for his lung bacteria and his kidneys are keeping up but not gaining ground. So there is still a fair amount of fluid in his tissues and in his body. Maybe in his lungs. Also in the lungs is the bacterial infection, and the damage done from all the previous ventilations and oscillation. We have been told that once again this area is primary, and will determine the direction of Max's success.
Dialysis will be discussed on a day to day basis. Rather than it being a kidney issue, now it's just a fluid issue as it relates to lungs. We shall see. Dr. Milla, from pulmonology said if he had it his way, they would take the fluid off the fastest way possible. But we've been reminded that this is not a "cost-free" process, and there are several serious risks.
As far as graft vs. host disease, maybe we have stalled a bit. It's hard to say. We saw his skin dramatically improve for a few days, and now it might be improving very slowly, or not at all. Tonight I see some new rashiness that hope is from one of his new meds, and not the GVH returning. In his guts, we have more bloody stuff coming up his OG tube, and he hasn't stooled in a few days. He had been stooling though, so no one is really worried about this.
Yesterday was the 100th day we have been in the hospital (counting chemo and day zero) so today is 101. We are still such a long way to ever coming home or getting out of the hospital. Our primary doctor, Dr. Grewal, came by a few days ago and went over everything with us. He brought us back from our denial mode. He told us he is very worried about Max. He has not made very much progress on this ventilator and since this is the fourth time he is in a very unique category. He looked it up, they did have a kid who was vented five times. But the reality is that Max's lungs are in very poor health. Dr. Grewal told us "the odds are not in his favor." It was hard to hear, no matter how obvious. He may not be able to overcome this and we have to appreciate every day. We've been looking at a lot of old pictures and my sister Peeps sent us a DVD that her husband made with footage of Max at her wedding. We miss the guy from the dance floor. We miss the guy from the pictures. We miss our guy.
Today, after the attending doctor and I talked about all that was going on with Max she said, "Let's try to focus on some positive things" and it meant a lot: his EEG showed no seizures, his kidneys and liver are working well, he has no major heart problems, he is making progress with his GVH, and he is still trying to help us on the vent. This was a great way to end our talk. Then she told me that we were very good advocates for Max and that we have a great understanding of what is going on with him. I got a little choked up because, really, we should. We are his parents, and even in a time of darkness, he is our little firefly. Sometimes it is just so hard to see the glow.
Still flickering hope,
--mike
Tonight we had some stress. Max's breathing seemed to be heavier on the vent. We've seen Max work hard to breathe before and the ventilator has always taken care of the problem. So to hear wheezing going on in his lungs while the ventilator is working is very distressing. What is causing this problem? As usual when it comes to Max's lungs, no one is sure. One thing that is certain, is that his weight loss has stopped. Of the 5 kilos gained, only a little less than 2 were lost. Then we started the three new meds for his lung bacteria and his kidneys are keeping up but not gaining ground. So there is still a fair amount of fluid in his tissues and in his body. Maybe in his lungs. Also in the lungs is the bacterial infection, and the damage done from all the previous ventilations and oscillation. We have been told that once again this area is primary, and will determine the direction of Max's success.
Dialysis will be discussed on a day to day basis. Rather than it being a kidney issue, now it's just a fluid issue as it relates to lungs. We shall see. Dr. Milla, from pulmonology said if he had it his way, they would take the fluid off the fastest way possible. But we've been reminded that this is not a "cost-free" process, and there are several serious risks.
As far as graft vs. host disease, maybe we have stalled a bit. It's hard to say. We saw his skin dramatically improve for a few days, and now it might be improving very slowly, or not at all. Tonight I see some new rashiness that hope is from one of his new meds, and not the GVH returning. In his guts, we have more bloody stuff coming up his OG tube, and he hasn't stooled in a few days. He had been stooling though, so no one is really worried about this.
Yesterday was the 100th day we have been in the hospital (counting chemo and day zero) so today is 101. We are still such a long way to ever coming home or getting out of the hospital. Our primary doctor, Dr. Grewal, came by a few days ago and went over everything with us. He brought us back from our denial mode. He told us he is very worried about Max. He has not made very much progress on this ventilator and since this is the fourth time he is in a very unique category. He looked it up, they did have a kid who was vented five times. But the reality is that Max's lungs are in very poor health. Dr. Grewal told us "the odds are not in his favor." It was hard to hear, no matter how obvious. He may not be able to overcome this and we have to appreciate every day. We've been looking at a lot of old pictures and my sister Peeps sent us a DVD that her husband made with footage of Max at her wedding. We miss the guy from the dance floor. We miss the guy from the pictures. We miss our guy.
Today, after the attending doctor and I talked about all that was going on with Max she said, "Let's try to focus on some positive things" and it meant a lot: his EEG showed no seizures, his kidneys and liver are working well, he has no major heart problems, he is making progress with his GVH, and he is still trying to help us on the vent. This was a great way to end our talk. Then she told me that we were very good advocates for Max and that we have a great understanding of what is going on with him. I got a little choked up because, really, we should. We are his parents, and even in a time of darkness, he is our little firefly. Sometimes it is just so hard to see the glow.
Still flickering hope,
--mike
posted by Mike Ciacciarelli
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