Day +81
I apologize for not updating last night and I hope I did not worry anyone. I was just a little tired and really did not have anything major to report - which is a very good thing.
He has made some back and forth movements on the vent, again nothing drastic. I wish all of the changes would be steps forward, but I am so grateful that none of the steps backward are major.
We have a new BMT attending today. She filled in for someone last weekend so she has met Max before. She has not seen him in a week and she was happy to see the progress he has made so far. His ventilation settings are much better than they were when she was last here and his skin is improving slowly but surely. Even the skin on his belly is slightly improved today. Dare I be encouraged? It is hard when we have seen him make so much progress in the past only to backslide with more and more complications each time. The doctor did say we can expect Max to be on a vent for a month or two. The important thing though is that he keeps trying and they have not given up hope. Last Tuesday it looked like his kidneys and gut were failing, and we did not know if he would make it another day. Now a week has gone by and if we have learned anything by now it is to never underestimate Max's will to live.
Max has been retaining more fluid the past couple of days. It may be because he is no longer getting one of his diuretics. There is a shortage of the medication and the manufacturer ran out. They have increased the doses of his other diuretics so let's hope that does the trick.
In other news, Mike, Grace and the Aunties went to see the new Disney movie last night, Brother Bear. The movie was a little disappointing, but Grace enjoyed herself nonetheless. My mother and sister Katie leave today and I am very sad. I just feel so much better when they are around. It is snowing like crazy here today and most of the grass is covered. Grace and Mike are pleased, but it is a little too early if you ask me.
Thanks again and again for your support,
Margaret
He has made some back and forth movements on the vent, again nothing drastic. I wish all of the changes would be steps forward, but I am so grateful that none of the steps backward are major.
We have a new BMT attending today. She filled in for someone last weekend so she has met Max before. She has not seen him in a week and she was happy to see the progress he has made so far. His ventilation settings are much better than they were when she was last here and his skin is improving slowly but surely. Even the skin on his belly is slightly improved today. Dare I be encouraged? It is hard when we have seen him make so much progress in the past only to backslide with more and more complications each time. The doctor did say we can expect Max to be on a vent for a month or two. The important thing though is that he keeps trying and they have not given up hope. Last Tuesday it looked like his kidneys and gut were failing, and we did not know if he would make it another day. Now a week has gone by and if we have learned anything by now it is to never underestimate Max's will to live.
Max has been retaining more fluid the past couple of days. It may be because he is no longer getting one of his diuretics. There is a shortage of the medication and the manufacturer ran out. They have increased the doses of his other diuretics so let's hope that does the trick.
In other news, Mike, Grace and the Aunties went to see the new Disney movie last night, Brother Bear. The movie was a little disappointing, but Grace enjoyed herself nonetheless. My mother and sister Katie leave today and I am very sad. I just feel so much better when they are around. It is snowing like crazy here today and most of the grass is covered. Grace and Mike are pleased, but it is a little too early if you ask me.
Thanks again and again for your support,
Margaret
posted by Mike Ciacciarelli
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