Work-Up Week Day 2
The second 9-hour hospital day brought us:
1. More blood work
2. Pulminology
3. A meeting with Stacy, our social worker
4. A "Caregivers" class
5. Gastrointestinal
6. Neurology
The blood work was quick and easy. Yesterday they took the maximum amount of blood for Max's weight. They wanted to retest Max's clotting number. No results yet. Pulminology was what we were most afraid of. And our fears were realized when Dr. Milla told us he heard wheezing in Max's lungs.
He wants that cleared up and under control before transplant and before the long OR session to do Max's MRI, bronchoscopy, endoscopy, CT Scan, and central line can go in.
That was supposed to be tomorrow, but now we have to administer more meds via his nebulizer and that awful struggle now takes about 40 minutes. Hopefully these new meds will toughen Max up quickly and he can have his transplant soon. The surgeries have all been postponed until next week. He will see us again Friday.
Stacy is the same social worker we met on our brief visit before and she's great. She's there to help us with any concerns we have both medical and non medical. Right now she's looking into schools and classes for Grace.
The Caregivers class was interesting and they have them every Tuesday for people who are caring for terminally ill patients. These classes are both informative and are also a sort of group therapy. We couldn't stay for the whole thing but we can see where we might learn a lot about how to better take care of ourselves so we can better take care of Max.
The gastrointestinal consult was for Max's acid reflux and he's ordered up another chest X-ray, this time involving Max drinking a barium solution. Sounds delicious. This X-ray and the endoscopy will be to determine if Max's wheezing is not just from weak lungs, but from his esophagus leaking into his trachea. Yikes.
Our last meeting was with neurology, and Dr. Charnas had a resident with him. As he described to the resident, the recent burst in gross motor skills in Max is "truly remarkable for someone with a bowling ball for a head." He seems to feel that Max is doing very well and that the best course of action for his hydrocephalus is transplant quickly. If things are going to be delayed for other reasons, there is a Plan B, and that is to begin enzyme replacement as way to help some relieve of the pressure in Max's head.
That's about it for today in hospital news. Grace and Gram Chick went to a story time and lunch at the house and then there was a big group art project after dinner. Grace is making a lot of friends, some of whom are getting work-up done like Max, so they will be heading to the hospital soon. Some of them wear masks because they're out of transplant but still very immunosuppressed. She thinks it's great to be making so many friends. Her best buddy so far is Kendall, 5, a girl who's leukemia has come back and she's scheduled for transplant on the 29th. All it takes is 5 minutes with a kid like this who has such a great outlook on the whole process. She makes you realize how precious your kids are, and also how unbelievably difficult the whole process is going to be.
Keep thinking good thoughts about us and all the kids here at the house and in the hospital.
Lots of love from Minnesota,
Mike
1. More blood work
2. Pulminology
3. A meeting with Stacy, our social worker
4. A "Caregivers" class
5. Gastrointestinal
6. Neurology
The blood work was quick and easy. Yesterday they took the maximum amount of blood for Max's weight. They wanted to retest Max's clotting number. No results yet. Pulminology was what we were most afraid of. And our fears were realized when Dr. Milla told us he heard wheezing in Max's lungs.
He wants that cleared up and under control before transplant and before the long OR session to do Max's MRI, bronchoscopy, endoscopy, CT Scan, and central line can go in.
That was supposed to be tomorrow, but now we have to administer more meds via his nebulizer and that awful struggle now takes about 40 minutes. Hopefully these new meds will toughen Max up quickly and he can have his transplant soon. The surgeries have all been postponed until next week. He will see us again Friday.
Stacy is the same social worker we met on our brief visit before and she's great. She's there to help us with any concerns we have both medical and non medical. Right now she's looking into schools and classes for Grace.
The Caregivers class was interesting and they have them every Tuesday for people who are caring for terminally ill patients. These classes are both informative and are also a sort of group therapy. We couldn't stay for the whole thing but we can see where we might learn a lot about how to better take care of ourselves so we can better take care of Max.
The gastrointestinal consult was for Max's acid reflux and he's ordered up another chest X-ray, this time involving Max drinking a barium solution. Sounds delicious. This X-ray and the endoscopy will be to determine if Max's wheezing is not just from weak lungs, but from his esophagus leaking into his trachea. Yikes.
Our last meeting was with neurology, and Dr. Charnas had a resident with him. As he described to the resident, the recent burst in gross motor skills in Max is "truly remarkable for someone with a bowling ball for a head." He seems to feel that Max is doing very well and that the best course of action for his hydrocephalus is transplant quickly. If things are going to be delayed for other reasons, there is a Plan B, and that is to begin enzyme replacement as way to help some relieve of the pressure in Max's head.
That's about it for today in hospital news. Grace and Gram Chick went to a story time and lunch at the house and then there was a big group art project after dinner. Grace is making a lot of friends, some of whom are getting work-up done like Max, so they will be heading to the hospital soon. Some of them wear masks because they're out of transplant but still very immunosuppressed. She thinks it's great to be making so many friends. Her best buddy so far is Kendall, 5, a girl who's leukemia has come back and she's scheduled for transplant on the 29th. All it takes is 5 minutes with a kid like this who has such a great outlook on the whole process. She makes you realize how precious your kids are, and also how unbelievably difficult the whole process is going to be.
Keep thinking good thoughts about us and all the kids here at the house and in the hospital.
Lots of love from Minnesota,
Mike
posted by Mike Ciacciarelli
0 Comments:
Post a Comment
<< Home