Day +4
Today was filled with lots of worry and anxiety for me and Mike. The pulminology team came in to look at Max since he is still wheezing. They increased his treatments from every 4 hours to every 2 hours, placed him on a monitor, and ordered a chest x-ray. Luckily they said it could be done with the portable machine so we did not have to venture out of our room and into germ land. The x-ray came back fine. However, Dr. Tolar (the transplant doctor who is currently in rotation - Dr. Grewal is on vacation now) came in and told me that the chances are high for Max to be put on a ventilator in the next couple of weeks. Max is expected to get really sick as the chemo works its way through his body and destroys his mouth and GI tract. Dr. Tolar feels Max may need support for his breathing during this time. He wants to watch Max closely and react early. He would rather have a scheduled intubation with the best staff available, rather than have an emergency situation with staff less experienced with Max's spinal cord issues.
The other scary thing is that Max has begun bruising all over. He is very active and has always sustained a lot of bonks, but he has never bruised like this before. It is freaking me out! They gave him some platelets this afternoon and are likely to give him more in the morning. Dr. Tolar said he normally wouldn't worry, but since Max was a premie with a brain bleed he wants to be cautious so his brain doesn't begin bleeding again!
When I came in this morning I also noticed a few hairs on Max's pillow. By mid-day clumps were falling out! I know Mike just mentioned in yesterday's update that his hair was holding strong. How quickly things change. It is all over the place. His sheets are covered, as are his pacifiers, bottles and clothes. Tomorrow we will give him a buzz cut. I knew it would happen but I have to admit I am a bit sad.
My mom and Katie left today too. We are on our own for the first time in MN.
We have some thank yous to give. We received a check today from the Pampered Chef fund raising event Mike's sister Dana hosted for us. My mom also gave us money her coworkers at Little Company of Mary Hospital raised. Between the two donations, our housing is paid for well over a month! We are so grateful!
Please pray that Max's lungs and veins stay strong!
Love, Margaret
The other scary thing is that Max has begun bruising all over. He is very active and has always sustained a lot of bonks, but he has never bruised like this before. It is freaking me out! They gave him some platelets this afternoon and are likely to give him more in the morning. Dr. Tolar said he normally wouldn't worry, but since Max was a premie with a brain bleed he wants to be cautious so his brain doesn't begin bleeding again!
When I came in this morning I also noticed a few hairs on Max's pillow. By mid-day clumps were falling out! I know Mike just mentioned in yesterday's update that his hair was holding strong. How quickly things change. It is all over the place. His sheets are covered, as are his pacifiers, bottles and clothes. Tomorrow we will give him a buzz cut. I knew it would happen but I have to admit I am a bit sad.
My mom and Katie left today too. We are on our own for the first time in MN.
We have some thank yous to give. We received a check today from the Pampered Chef fund raising event Mike's sister Dana hosted for us. My mom also gave us money her coworkers at Little Company of Mary Hospital raised. Between the two donations, our housing is paid for well over a month! We are so grateful!
Please pray that Max's lungs and veins stay strong!
Love, Margaret
posted by Mike Ciacciarelli
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