Day +47
WBC 4.2
Sorry for the lack of update yesterday, but it was hectic and it's hard to keep up because with less nursing care, we have to be totally vigilant by the bedside with Max. It's been a tough couple of days. It's been 47 days since Max was transplanted and when looked at as total journey it seems like it's been a lot more bad than good. I know we should be glad that Max is engrafted and is still here with us, but damn, the lingering effects of sepsis, VRE, two intubations, and GVHD are just starting to take their toll on us as well as Max. There are so many departments managing his care and it is hard to keep it all on track. Sometimes we are called upon to make the best decisions for Max but we are barely getting enough sleep and we are not doctors and sometimes it is just too much. We are trying to put a consult together with us, nurses, and all the department doctors so that we can at least get everyone together in one room. We know we're getting outstanding care and that Max has been the recipient of a lot of bad luck, but we are feeling a little beat up too and we could use some more good news.
He's still struggling off the vent. I guess it's a matter of perspective. While we felt Max was doing OK off the vent, pulminology has a different opinion altogether. Max went into some minor distress this morning and it was decided that it was time to get Pulminology back involved with Max (ICU had been watching his breathing since he had been vented). We were a little dismayed that they had been away for so long, but glad they were back. Beginning at around noon today, they've begun to treat Max very aggressively. He was given nebulizer treatments every hour and then at 6 o'clock tonight he began a 4-hour constant Albuterol treatment. After this, they will review things again. He is still "junky," requiring suctioning down his throat and nose every four hours. The nebs are for his wheezing which had gone away but has resurfaced today. This constant Albuterol treatment was one of the last things they tried before Max went back on the vent last time so we're more than a little scared.
As for his GVHD, he stooled less than his usual amount yesterday so they postponed the flex scope of his rear end. This was probably good with this lungs beginning to decline. But when we look in the diapers, we don't see much to feel good about.
And in a surprise turn of events, we have a new team involved - Dermatology. Max's back has been bruising and in a couple of spots, the bruises have looked pretty severe. The best explanation is that his capillaries are losing the battle with his increased steroids during BDs (BDs are "bronchial drainage" hits that Max gets on his back and chest to loosen secretions). On his upper right shoulder it even looked sort of black and had a raised spot in the center. So the BMT fellow looked outside and the attending Dermatologist happened to be on the unit. They came in, looked at things and decided to do a biopsy. This involved a small circle-cutting tool twisting into his shoulder and then pulling out the skin sample. Then they stitched him up. They took two samples to be sure it's just a bad bruise and not some sort of mysterious infection.
Additionally, neurology was consulted because even though Max is a lot more awake now, he's "out of it" a lot of times. He's not himself, he doesn't have much personality, and he's kind of off in space. He was curious about something called steroid psychosis, where the patient gets a little delirious from being on high dose steroids. But once he went through Max's medicines, he thinks it's just the carry-over of his intubation sedation, and it may be 2 or 3 weeks before all things straighten out.
Is that it? Whew! With so much going on, it's hard to keep these updates short and sweet. Check out the photos section, we've finally got some new pix on the bottom of the page.
Thanks for reading this far, and thanks for supporting us.
--mike
Sorry for the lack of update yesterday, but it was hectic and it's hard to keep up because with less nursing care, we have to be totally vigilant by the bedside with Max. It's been a tough couple of days. It's been 47 days since Max was transplanted and when looked at as total journey it seems like it's been a lot more bad than good. I know we should be glad that Max is engrafted and is still here with us, but damn, the lingering effects of sepsis, VRE, two intubations, and GVHD are just starting to take their toll on us as well as Max. There are so many departments managing his care and it is hard to keep it all on track. Sometimes we are called upon to make the best decisions for Max but we are barely getting enough sleep and we are not doctors and sometimes it is just too much. We are trying to put a consult together with us, nurses, and all the department doctors so that we can at least get everyone together in one room. We know we're getting outstanding care and that Max has been the recipient of a lot of bad luck, but we are feeling a little beat up too and we could use some more good news.
He's still struggling off the vent. I guess it's a matter of perspective. While we felt Max was doing OK off the vent, pulminology has a different opinion altogether. Max went into some minor distress this morning and it was decided that it was time to get Pulminology back involved with Max (ICU had been watching his breathing since he had been vented). We were a little dismayed that they had been away for so long, but glad they were back. Beginning at around noon today, they've begun to treat Max very aggressively. He was given nebulizer treatments every hour and then at 6 o'clock tonight he began a 4-hour constant Albuterol treatment. After this, they will review things again. He is still "junky," requiring suctioning down his throat and nose every four hours. The nebs are for his wheezing which had gone away but has resurfaced today. This constant Albuterol treatment was one of the last things they tried before Max went back on the vent last time so we're more than a little scared.
As for his GVHD, he stooled less than his usual amount yesterday so they postponed the flex scope of his rear end. This was probably good with this lungs beginning to decline. But when we look in the diapers, we don't see much to feel good about.
And in a surprise turn of events, we have a new team involved - Dermatology. Max's back has been bruising and in a couple of spots, the bruises have looked pretty severe. The best explanation is that his capillaries are losing the battle with his increased steroids during BDs (BDs are "bronchial drainage" hits that Max gets on his back and chest to loosen secretions). On his upper right shoulder it even looked sort of black and had a raised spot in the center. So the BMT fellow looked outside and the attending Dermatologist happened to be on the unit. They came in, looked at things and decided to do a biopsy. This involved a small circle-cutting tool twisting into his shoulder and then pulling out the skin sample. Then they stitched him up. They took two samples to be sure it's just a bad bruise and not some sort of mysterious infection.
Additionally, neurology was consulted because even though Max is a lot more awake now, he's "out of it" a lot of times. He's not himself, he doesn't have much personality, and he's kind of off in space. He was curious about something called steroid psychosis, where the patient gets a little delirious from being on high dose steroids. But once he went through Max's medicines, he thinks it's just the carry-over of his intubation sedation, and it may be 2 or 3 weeks before all things straighten out.
Is that it? Whew! With so much going on, it's hard to keep these updates short and sweet. Check out the photos section, we've finally got some new pix on the bottom of the page.
Thanks for reading this far, and thanks for supporting us.
--mike
posted by Mike Ciacciarelli
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