Day +50
WBC 6.4
The care conference was overall not as bad as we feared. Max's situations are critical, our fears are real, but he is still in the game. We had a nurse coordinator, the nurse administrator, a respiratory therapist, a pulminologist, our current BMT attending, the current BMT fellow, our original primary BMT doc, and our neurologist there. Everyone wants Max to get better. And they recognized some of our frustrations and they tried to hear us out. They have changed our nursing situation back to one-to-one in anticipation of intubating Max again.
They all realize that he is still fighting his two battles simultaneously and the plan for his gut GVHD is the increase in steroids. The plan for his lungs is much more difficult to predict. The biggest news is that the pulminologist feels that Max isn't just acting like a bad asthmatic, he's also displaying symptoms consistent with chronic lung disease from prematurity. He wasn't on oxygen or vented very long as a preemie, but when combined with Hurler, he probably has chronic lung disease in some form. He told us that the best treatment for this is growth, but that's down the road as he gets older. Of course, he's got to get through his current trauma to get there, but it was still sort of nice to hear a doctor talk about the future. Every time someone gets vented, they become more of a "high risk" patient, and if it happens for Max it'll be the third time. Nobody feels this is a good thing long term, but if it has to happen it may give him some rest and comfort and hopefully his lungs can open up. His wheezing is getting really bad, and going on a vent is not really a treatment for wheezing, it's kind of a last resort to offer some rest.
I guess the best case scenario at this point is for Max to respond to the new IV bronchodilator. It would be great if that opened up his lungs and we could come off the constant Albuterol mask. But it seems clear that no one is too hopeful for that to happen. So if vented, we have to hope that his lungs can heal again and that his guts will respond to the new steroid doses. Maybe if his intestines can stop bleeding and get better, he can be treated for the breathing slightly different (if he comes off the vent).
Neurology feels Max is medically delirious. He is there, but not there. He is feeling the effects of the meds that sedated him on the vent. Now that he's likely going on the vent again, who knows how much farther that will set him back. He said he's not worried much about Max because these are just meds that take a really long time to wear off.
What can we say? We were told that at day 50, for someone who had been through sepsis, has VRE, skin/gut/liver GVHD, has been intubated twice, etc. Max is doing well. But that was a lot of qualification before "doing well". Still, the alternatives are worse. We are glad Max is here with us even if neurology tells us that he's not mentally here with us. He's fighting so hard to breathe and there's just no quit in our boy. Many many of Max's caretakers have told us that most adults would have given up by now and just been vented. But Max is a trooper.
__________________________________
Midday Update
The docs are trying their last resort before venting Max again. He is working harder and harder to breathe and his blood gases are showing it. They will be giving him an IV broncho-dialator now and if that doesn't help they will intubate him. We have our meeting with the docs in 1 hour and it is looking like it will be a lot of bad news.
He just got a new IV in his head for the new med.
-Margaret
The care conference was overall not as bad as we feared. Max's situations are critical, our fears are real, but he is still in the game. We had a nurse coordinator, the nurse administrator, a respiratory therapist, a pulminologist, our current BMT attending, the current BMT fellow, our original primary BMT doc, and our neurologist there. Everyone wants Max to get better. And they recognized some of our frustrations and they tried to hear us out. They have changed our nursing situation back to one-to-one in anticipation of intubating Max again.
They all realize that he is still fighting his two battles simultaneously and the plan for his gut GVHD is the increase in steroids. The plan for his lungs is much more difficult to predict. The biggest news is that the pulminologist feels that Max isn't just acting like a bad asthmatic, he's also displaying symptoms consistent with chronic lung disease from prematurity. He wasn't on oxygen or vented very long as a preemie, but when combined with Hurler, he probably has chronic lung disease in some form. He told us that the best treatment for this is growth, but that's down the road as he gets older. Of course, he's got to get through his current trauma to get there, but it was still sort of nice to hear a doctor talk about the future. Every time someone gets vented, they become more of a "high risk" patient, and if it happens for Max it'll be the third time. Nobody feels this is a good thing long term, but if it has to happen it may give him some rest and comfort and hopefully his lungs can open up. His wheezing is getting really bad, and going on a vent is not really a treatment for wheezing, it's kind of a last resort to offer some rest.
I guess the best case scenario at this point is for Max to respond to the new IV bronchodilator. It would be great if that opened up his lungs and we could come off the constant Albuterol mask. But it seems clear that no one is too hopeful for that to happen. So if vented, we have to hope that his lungs can heal again and that his guts will respond to the new steroid doses. Maybe if his intestines can stop bleeding and get better, he can be treated for the breathing slightly different (if he comes off the vent).
Neurology feels Max is medically delirious. He is there, but not there. He is feeling the effects of the meds that sedated him on the vent. Now that he's likely going on the vent again, who knows how much farther that will set him back. He said he's not worried much about Max because these are just meds that take a really long time to wear off.
What can we say? We were told that at day 50, for someone who had been through sepsis, has VRE, skin/gut/liver GVHD, has been intubated twice, etc. Max is doing well. But that was a lot of qualification before "doing well". Still, the alternatives are worse. We are glad Max is here with us even if neurology tells us that he's not mentally here with us. He's fighting so hard to breathe and there's just no quit in our boy. Many many of Max's caretakers have told us that most adults would have given up by now and just been vented. But Max is a trooper.
__________________________________
Midday Update
The docs are trying their last resort before venting Max again. He is working harder and harder to breathe and his blood gases are showing it. They will be giving him an IV broncho-dialator now and if that doesn't help they will intubate him. We have our meeting with the docs in 1 hour and it is looking like it will be a lot of bad news.
He just got a new IV in his head for the new med.
-Margaret
posted by Mike Ciacciarelli
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