Day +25
WBC 2.0
Go white blood cells! Two steps forward, two steps back. That is the way it has always been for Mighty Max. Yesterday they lowered Max's vent settings and spoke of extubating him today or tomorrow. The BMT resident also scheduled a pressure support trial (which is a test to see if he is ready to come off the vent), which got our hopes up. But then Max's chest x-ray from this morning showed that his lower left lung had filled with some fluid and partially collapsed. Needless to say, the pressure test and talks of extubation were put on hold. We were so disappointed. They raised the vent settings and are suctioning his lungs a lot. They took a sample of the fluid to test it.
The amount of fluid from Max’s og tube (similar to the ng tube he had as a preemie) pretty much stopped today. This tube pulls the fluid from his tummy. It had been pulling a lot of fluid prior to today. They replaced his tube in case that was the problem, and it seems to be pulling a little more out. On the flip side, he began stooling a lot today. I am not sure if the two are related or not. There has been a little blood in both types of output.
Max is shedding his skin like crazy. The poor boy looks as if he has spent days and days in a tanning booth. The doctors attribute this to one of his chemo drugs, Busulfan.
After consulting with the infectious disease doctors, they put Max on a new antibiotic called Synercid to fight the VRE. We are anxious to discuss this with the BMT attending doctor, as we were told the WBC could take a hit with this drug. We continue to wear gowns and gloves in the room. Grace came to see Max today and looked very cute in her enormous gown and floppy purple gloves.
Speaking of Grace, she has had it with Max being in the hospital. Yesterday she told me that she wanted to go back to Illinois so we could all be a family again : ( She is surrounded by sick kids at RMH, and she asked me what type of disease she had. We wonder what is going on in her head throughout all of this. Today she played with a Child Life Specialist and they have plans to meet again tomorrow. They do some medical play as well as other things. Grace really seems to enjoy it. Maybe it will help her cope with things more. Grannie, Grace and I are going to have a “ladies day” tomorrow.
Aunt Dana left early this morning. She and Uncle Geoff will be traveling to London for Geoff’s graduation from business school. Congrats Geoff and congrats to Grace’s friend and Max’s BMT neighbor Kendall. Her parents found out today that she is 100% engrafted. She is all donor cells!
Please continue to pray for Max and his BMT and Hurler friends. It is so hard to see him like this. What I wouldn’t give just to hold him again, or for him to smile at me. Hug your kids!
-Margaret
Go white blood cells! Two steps forward, two steps back. That is the way it has always been for Mighty Max. Yesterday they lowered Max's vent settings and spoke of extubating him today or tomorrow. The BMT resident also scheduled a pressure support trial (which is a test to see if he is ready to come off the vent), which got our hopes up. But then Max's chest x-ray from this morning showed that his lower left lung had filled with some fluid and partially collapsed. Needless to say, the pressure test and talks of extubation were put on hold. We were so disappointed. They raised the vent settings and are suctioning his lungs a lot. They took a sample of the fluid to test it.
The amount of fluid from Max’s og tube (similar to the ng tube he had as a preemie) pretty much stopped today. This tube pulls the fluid from his tummy. It had been pulling a lot of fluid prior to today. They replaced his tube in case that was the problem, and it seems to be pulling a little more out. On the flip side, he began stooling a lot today. I am not sure if the two are related or not. There has been a little blood in both types of output.
Max is shedding his skin like crazy. The poor boy looks as if he has spent days and days in a tanning booth. The doctors attribute this to one of his chemo drugs, Busulfan.
After consulting with the infectious disease doctors, they put Max on a new antibiotic called Synercid to fight the VRE. We are anxious to discuss this with the BMT attending doctor, as we were told the WBC could take a hit with this drug. We continue to wear gowns and gloves in the room. Grace came to see Max today and looked very cute in her enormous gown and floppy purple gloves.
Speaking of Grace, she has had it with Max being in the hospital. Yesterday she told me that she wanted to go back to Illinois so we could all be a family again : ( She is surrounded by sick kids at RMH, and she asked me what type of disease she had. We wonder what is going on in her head throughout all of this. Today she played with a Child Life Specialist and they have plans to meet again tomorrow. They do some medical play as well as other things. Grace really seems to enjoy it. Maybe it will help her cope with things more. Grannie, Grace and I are going to have a “ladies day” tomorrow.
Aunt Dana left early this morning. She and Uncle Geoff will be traveling to London for Geoff’s graduation from business school. Congrats Geoff and congrats to Grace’s friend and Max’s BMT neighbor Kendall. Her parents found out today that she is 100% engrafted. She is all donor cells!
Please continue to pray for Max and his BMT and Hurler friends. It is so hard to see him like this. What I wouldn’t give just to hold him again, or for him to smile at me. Hug your kids!
-Margaret
posted by Mike Ciacciarelli
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