Today was better than yesterday, but Raul still felt
pretty crummy. He was up at 7, and didn't take his first nap until about
2pm. Then he slept for an hour, was up for a little over an hour, and
then went back to sleep. He did get down on the floor mat for a few
minutes in the afternoon with his cars before requesting to go back to
bed. This morning when he woke up his left eye was really bothering him,
but thankfully it wasn't scratched, I think it was just dry as he
was not closing his eyes all the way yesterday while he napped. It
improved throughout the day, and we are working on getting eye drops for
him.
Last night we ran his
formula at 10ml/hr, which he tolerated (in addition to extra IV
fluids). But then when he woke up today he started gagging again so we
turned his feeds back off and haven't restarted them yet. The gagging
has been a little better when he isn't getting formula, but he did still
vomit some bile and still has diarrhea.
This morning we did a bandage change and wash with potassium permanganate. His wounds bled a lot even though his platelet count is still within normal range. I think it was mostly that his big wounds do not like the daily dressing changes as the bandages stick more. Luckily he was simultaneously getting a blood transfusion due to a low level overnight, so at least we were replacing what we lost!
Today they added CSA and MMF, two immunosuppresants that will hopefully help prevent Graft vs Host after transplant. He also has prophylactic antiviral and antifungal medications.
This morning my mom and sister took part in the 5k for the Twin Cities Marathon weekend, and tomorrow my sister will also be running the 10 mile race. Raul was excited to try on one of their medals! Then this afternoon while Raul napped I went down to meet some of the other EB families and supporters here for the race; all who are running in support of the EBRP to help fund research into treatments and ultimately a cure for EB!
Tomorrow is Raul's last day of chemo, then we have one day of radiation before transplant!
This morning we did a bandage change and wash with potassium permanganate. His wounds bled a lot even though his platelet count is still within normal range. I think it was mostly that his big wounds do not like the daily dressing changes as the bandages stick more. Luckily he was simultaneously getting a blood transfusion due to a low level overnight, so at least we were replacing what we lost!
Today they added CSA and MMF, two immunosuppresants that will hopefully help prevent Graft vs Host after transplant. He also has prophylactic antiviral and antifungal medications.
This morning my mom and sister took part in the 5k for the Twin Cities Marathon weekend, and tomorrow my sister will also be running the 10 mile race. Raul was excited to try on one of their medals! Then this afternoon while Raul napped I went down to meet some of the other EB families and supporters here for the race; all who are running in support of the EBRP to help fund research into treatments and ultimately a cure for EB!
Tomorrow is Raul's last day of chemo, then we have one day of radiation before transplant!
Love You, Raul. You, too, C. Continuing to pray. - Jo
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