Day +68
First, let me say thank you to Mighty Mike for staying two days in a row with Max. I wasn't feeling well and Grace is sick so I thought it best to stay away. Mike, you are such a great, great father!
Max had a pretty stressful night last night. He was quite wheezy. The pulminologist who was here for a few days made some changes to Max's meds the other day. Max had been getting very shaky after his breathing treatments so the pulminologist wanted to cut any meds that may have been contributing to the shakes. It is unclear if Max started wheezing because of the change in meds or if he was headed in that direction anyway.
Today Dr. Milla came on service for pulminology. We met him after Max was first diagnosed and he was one of the reasons we chose to have Max's transplant in MN. He feels that on top of "good old Max" who had a reactive airway to begin with, Max does have some trachea malacia (floppy airway). You may remember that an ENT scoped Max's airway a few weeks ago and said his airway was okay. Dr. Milla said that it is not anatomical, but it is there. I am still a bit confused, but I trust him and it fits with Max's overall picture. Dr. Milla also feels that Max's GVH may be in his lungs or his airway. He said BMT may not agree with him, but he said if Max is showing signs on his skin and in his gut, it makes sense that the angry cells would be in the airway too. He feels Max needs some extra pressure to keep his airway open so he wants to try him on a c-pap machine tomorrow. This is a bit scary to us, as Max was on c-pap before he was vented the first time. He did not tolerate it well. Dr. Milla feels it is worth another try.
As for his brain, Dr. Charnas (neurologist) ordered another EEG tomorrow to check for seizures. They still do not know what is causing them. His soft spot felt much fuller today, and Charnas said he has not ruled out hydrocephalus completely.
Dr. Grewal, Max's primary BMT doc, stopped by today. His main concern is the GVH. He said he has never seen such a bad case in a cord blood transplant before. He also said that Max has one of the worse cases of any transplant he has seen. This is not something we wanted to hear. They started Max on MMF yesterday. It is another drug to fight GVH. They have not taken him off his old one (CSA), instead he is getting them together. There is still a chance that the CSA is causing the seizures.
My mom came in last night to help out. Perfect timing since Grace and I were under the weather.
Please pray that Max's new cells find peace in his body and say some prayers for his doctors as well.
Thanks,
Margaret
Max had a pretty stressful night last night. He was quite wheezy. The pulminologist who was here for a few days made some changes to Max's meds the other day. Max had been getting very shaky after his breathing treatments so the pulminologist wanted to cut any meds that may have been contributing to the shakes. It is unclear if Max started wheezing because of the change in meds or if he was headed in that direction anyway.
Today Dr. Milla came on service for pulminology. We met him after Max was first diagnosed and he was one of the reasons we chose to have Max's transplant in MN. He feels that on top of "good old Max" who had a reactive airway to begin with, Max does have some trachea malacia (floppy airway). You may remember that an ENT scoped Max's airway a few weeks ago and said his airway was okay. Dr. Milla said that it is not anatomical, but it is there. I am still a bit confused, but I trust him and it fits with Max's overall picture. Dr. Milla also feels that Max's GVH may be in his lungs or his airway. He said BMT may not agree with him, but he said if Max is showing signs on his skin and in his gut, it makes sense that the angry cells would be in the airway too. He feels Max needs some extra pressure to keep his airway open so he wants to try him on a c-pap machine tomorrow. This is a bit scary to us, as Max was on c-pap before he was vented the first time. He did not tolerate it well. Dr. Milla feels it is worth another try.
As for his brain, Dr. Charnas (neurologist) ordered another EEG tomorrow to check for seizures. They still do not know what is causing them. His soft spot felt much fuller today, and Charnas said he has not ruled out hydrocephalus completely.
Dr. Grewal, Max's primary BMT doc, stopped by today. His main concern is the GVH. He said he has never seen such a bad case in a cord blood transplant before. He also said that Max has one of the worse cases of any transplant he has seen. This is not something we wanted to hear. They started Max on MMF yesterday. It is another drug to fight GVH. They have not taken him off his old one (CSA), instead he is getting them together. There is still a chance that the CSA is causing the seizures.
My mom came in last night to help out. Perfect timing since Grace and I were under the weather.
Please pray that Max's new cells find peace in his body and say some prayers for his doctors as well.
Thanks,
Margaret
posted by Mike Ciacciarelli
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