This morning when I woke up it was -10 degrees (-28 with windchill), and it has only gotten a little better as the day has gone along! Raul got two passes this week to go out of the hospital. Today we bundled him up and went to visit the fire station, where we got a nice tour. Raul talked to the fire fighters, and even asked them about their axe and radio. His legs were hurting him a lot, but he was glad we went! They invited us to come back any time. He is now napping after his busy morning.
We got up to his full amount of formula a few days ago, but then had to back off a little, though not enough that he would have to go back on TPN. We have also added baby food green beans to his formula to help with his stool. This has been our biggest issue lately, but we are hoping it will improve and we won't have to go back to TPN. It has also made him a bit dehydrated, so we haven't been pulling fluid the past few dialysis runs.
We think his dry weight has likely increased again as well. We are now discussing trying peritoneal dialysis for him, as that would be every night and we would not see such extreme fluid shifts and super high BUNs as we do with doing hemodialysis four days a week. In people without kidney failure, our kidneys are working 24/7, not just 12-16 hours per week! If it worked, this could also be done at home, which would be a huge bonus for when we go back to MA! We are looking at doing the catheter for the peritoneal dialysis next week, as he will have to go to the OR anyway for some day +100 tests.
Raul's labs remain pretty much the same. His bilirubin goes up and down, but isn't going quite as high on the spikes. He is still needing platelets and blood pretty regularly, but can go a couple days in between. WBC/ANC have stayed at good levels and he has not needed GCSF since December 27th. His fevers are still happening 1-2 times a day usually, but not always as high as we had been seeing at his worst. He has been acting much more like himself lately, and been talking a lot more, which is great! We are working on trying to get him out of bed and out of the room more often to help build up his strength.
We got up to his full amount of formula a few days ago, but then had to back off a little, though not enough that he would have to go back on TPN. We have also added baby food green beans to his formula to help with his stool. This has been our biggest issue lately, but we are hoping it will improve and we won't have to go back to TPN. It has also made him a bit dehydrated, so we haven't been pulling fluid the past few dialysis runs.
We think his dry weight has likely increased again as well. We are now discussing trying peritoneal dialysis for him, as that would be every night and we would not see such extreme fluid shifts and super high BUNs as we do with doing hemodialysis four days a week. In people without kidney failure, our kidneys are working 24/7, not just 12-16 hours per week! If it worked, this could also be done at home, which would be a huge bonus for when we go back to MA! We are looking at doing the catheter for the peritoneal dialysis next week, as he will have to go to the OR anyway for some day +100 tests.
Raul's labs remain pretty much the same. His bilirubin goes up and down, but isn't going quite as high on the spikes. He is still needing platelets and blood pretty regularly, but can go a couple days in between. WBC/ANC have stayed at good levels and he has not needed GCSF since December 27th. His fevers are still happening 1-2 times a day usually, but not always as high as we had been seeing at his worst. He has been acting much more like himself lately, and been talking a lot more, which is great! We are working on trying to get him out of bed and out of the room more often to help build up his strength.
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