I went to the Day Hospital today...wrong day...the appt was changed to next week. My fault. I had to pick up Septra (antibiotic) at the pharmacy so the trip was not wasted. On the way home we went shopping at Whole Foods. David is more emotionally unstable on steroids, so we got some interesting looks from people when he screamed at his highest pitch and shook the cart with all his might. We were Thanksgiving shopping, so it ended up being a long trip at WF.
David is doing fine but his rash has only improved about 10%. He does not tollerate me rubbing steroid creme all over his body. When I get to his cheeks and nose, being very careful not to get it in his eyes or mouth, he spits and screams. It's been difficult.
He is almost finished breastfeeding. Caput! I'm worried because his tounge developed large white pigment/splotches. I'm worried about mouth GVHD. The doctors tried to look in his mouth but David was totally uncooperative. They had to hold him down and use the tounge depressor which only made him more upset. Breast milk contains a lot of good things, so good that I believe my breast milk played a huge role in the health of David's GI track. I'm not worried about the emotional separation of breastfeeding. It's all about his health. He was only breastfeeding at night, which was really a pacifier to get him to sleep. Lately, I've been encouraging him to breastfeed in the morning when the supply is best. He's been receptive. I'm not sure if there is any milk. I'll pull out my breast pump and see.
We are keeping Thanksgiving at my aunt's house. My grandmother will be there too. In November 2006, we had just came home from Ronald McDonald House. It's all a blur. My only memories are from the photos we took.
Thanks for checking in and for your continued prayers. I hope you all have a scrumptious, marvelous, and superb Thanksgiving!
Would you mind praying for our little toddler friend CJ? He is post BMT and cannot keep liquids and food down. He is in the hospital right now. I would love to see him home for Thanksgiving; eating, drinking and having a merri time with his family.
David's current meds:
Prograf: 5.2ml twice/day
Steroids 3.2ml once/day
Septra 4.0ml twice/day
Folic Acid
Multi Vitamin
Calcium
Zenopax infusion every two weeks
IVIG once/month
No comments:
Post a Comment