Day +28
WBC 8.9
ANC 5.5
Max has enzymes! We came here to Minnesota because Max needed them and they are here! The transplanted cells have grown enough inside him to give him an enzyme level of 46. This is up from zero. What does this mean? Well, probably it means that the donor cells are growing inside Max. The engraftment results are still not in so we don't know how much Max has engrafted. We also don't know what to expect about the enzyme level. We know that all numbers can go up and down so we hope that with a number like 46 we can go either way. But this IS good news, and we are definitely excited about it. We just can't get ahead of ourselves when there is such a long way to go.
Max started his day by having a flexible camera inserted into his buttski and a small biopsy was done from the inside. This was done to test for gastrointestinal GVH, but the results didn't come back today. They should be in tomorrow. The GI doctor thought that Max's insides looked fairly good, but we won't know for sure for a little while. His stools continue to look awful, and worse. Watery, dark, lots of mucous-- if we had to guess, it would be GVH, but we hope not. If it is, steroids will begin immediately.
At around 1 o'clock they noticed Max's hemoglobin (red blood cells) had dropped by 3 points. This seemed to be alarming to the nurses and doctors. It didn't appear to be procedural because the amount of blood lost from a small biopsy shouldn't account for that kind of loss. His abdomen was x-rayed (nothing remarkable), his heart rate and BP remained stable, and his lungs continue to sound clear. He was given more hemoglobin and they are watching it tonight. So, another mystery. The fellow said today that "Max has obviously NOT read the medical books" because he continues to behave in ways they are not expecting. Hopefully there will be an explanation for this tomorrow.
As for being on the vent: The ICU doctor felt that Max is getting very close to being able to be extubated. He continues to do well on the pressure support trials. For periods of time, he is breathing without the vent, only with a little extra oxygen. He is our little champ and I can't wait until I can hear his coughs and cries again. When he's mad he's just so silent, and that's twice as sad as seeing and hearing it for real.
Lots of reasons to feel good today. Thanks for everyone's support. Please continue to visit the Hurler families on our site, they have emailed us and thanked us for your support. Keep it up!
Gotta go, Max just dropped a diaper bomb on the nurse,
Mike
ANC 5.5
Max has enzymes! We came here to Minnesota because Max needed them and they are here! The transplanted cells have grown enough inside him to give him an enzyme level of 46. This is up from zero. What does this mean? Well, probably it means that the donor cells are growing inside Max. The engraftment results are still not in so we don't know how much Max has engrafted. We also don't know what to expect about the enzyme level. We know that all numbers can go up and down so we hope that with a number like 46 we can go either way. But this IS good news, and we are definitely excited about it. We just can't get ahead of ourselves when there is such a long way to go.
Max started his day by having a flexible camera inserted into his buttski and a small biopsy was done from the inside. This was done to test for gastrointestinal GVH, but the results didn't come back today. They should be in tomorrow. The GI doctor thought that Max's insides looked fairly good, but we won't know for sure for a little while. His stools continue to look awful, and worse. Watery, dark, lots of mucous-- if we had to guess, it would be GVH, but we hope not. If it is, steroids will begin immediately.
At around 1 o'clock they noticed Max's hemoglobin (red blood cells) had dropped by 3 points. This seemed to be alarming to the nurses and doctors. It didn't appear to be procedural because the amount of blood lost from a small biopsy shouldn't account for that kind of loss. His abdomen was x-rayed (nothing remarkable), his heart rate and BP remained stable, and his lungs continue to sound clear. He was given more hemoglobin and they are watching it tonight. So, another mystery. The fellow said today that "Max has obviously NOT read the medical books" because he continues to behave in ways they are not expecting. Hopefully there will be an explanation for this tomorrow.
As for being on the vent: The ICU doctor felt that Max is getting very close to being able to be extubated. He continues to do well on the pressure support trials. For periods of time, he is breathing without the vent, only with a little extra oxygen. He is our little champ and I can't wait until I can hear his coughs and cries again. When he's mad he's just so silent, and that's twice as sad as seeing and hearing it for real.
Lots of reasons to feel good today. Thanks for everyone's support. Please continue to visit the Hurler families on our site, they have emailed us and thanked us for your support. Keep it up!
Gotta go, Max just dropped a diaper bomb on the nurse,
Mike
posted by Mike Ciacciarelli
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