Reece had another good day in the PICU. He lost a lot of water weight overnight (a good thing), so he looked much better. He did several trials on high flow oxygen to take a break from BiPAP and handled it very well. He had another CT scan today. It looks relatively unchanged as far as extra “stuff” in his lungs, but it has moved around some. They feel it is old blood or some other matter that has already been there. This is typical in this situation as it takes time for the body to reabsorb or rid whatever is in his lungs. There is no way to know what it is without doing another bronchoscopy, which is not necessary at this time. None of the tests that they conducted have come back positive for infection so far. We are told that often times there is no known cause for a pulmonary hemorrhage.
We’ll see how the night goes. Assuming that he continues to be stable on BiPAP, there is talk that he could go back to BMT tomorrow. Again, anything can happen, so that is tentative. They will also put Reece on an oxygen-weaning plan with the goal of having him off BiPAP in roughly another week. He will likely wear the mask at night and work on staying on high flow during the day. It is critical for him to have the extra air pressure in his lungs to act as a sort of bandage in the healing process.
It would be a great encouragement to Reece to go back to his BMT room. He has been asking for this since we have arrived at the PICU a week ago. We can tell that he is going through a rough coping spot–I can not blame him. We have all struggled with this latest setback, as one can imagine. Reece did not speak a word to me today and I am sure the entire process is confusing to him. We do our best to explain things, but it is difficult to explain the bigger picture to a four-year-old. He has every right to feel the way he seems to be feeling.
- Continued breathing improvement
- Protection from further hemorrhaging
- Rest and encouragement for Reece; a renewed spirit
- Healing for Reece’s body
- Progress in all things BMT
- Remission and life
- Protection from further infections and side effects
I know you get my point. We have been talking to the doctor a lot over the last couple of days. The attending physician right now is the same doctor we worked with during Work Up Week. He knows I don’t want to know stats, but he has been open about some things related to MDS. It is a very persistent disease; I don’t want to know the relapse rate, but I can read between the lines. Please join me in praying that Reece never has to face BMT again and that this disease is gone forever from his body. Thank-you.