Today really went smoothly! I guess so far Day One has been the worst.
Hans received his ch14.18 at the higher rate all day. He is just now finishing up the dose and flush. Ten hours! I'm pleased. He didn't really have an eventful day. He has been grazing on food and thirsty for drinks. My mom has been keeping him in Popeye's chicken. He has been snacking on popcorn, peanuts, goldfish, raspberries, grapes, fruit roll ups and drinking his favorite Mt. Dew, as well as cran raspberry juice and water. He has been thirsty!
We had just a little excitement this morning. Hans' Albumin was low. I learned today that Albumin is a blood product; a volume expander. If your Albumin is low you can retain fluids. It's one of the levels they watch closely on this therapy. They gave him an infusion and then more Lasix to help drain off the fluids. He also had just a low enough HGB to warrant a transfusion! Hans' HGB was 9.7 and it needs to be 10.0 to get the antibody infusion. This morning was a little chaotic...he didn't have enough lines for all of his infusion needs. They actually debated added a second IV. I just calmly shook my head no. They were able to use his Insuflon device for his GMCSF injection and save him one two-hour transfusion. Ultimately, they didn't have a line for morphine during the first hour of the ch14.18 infusion, so he got a loading dose, and then went with out. He did well! I am relieved. Sometimes Hans is soooo tough, and sometimes he's pretty vulnerable. We just never to what to expect. Whew.
We got a sweet treat today. Ms. Hodges came down to see us. She delivered us this banner from Warren as well as a new Lego set and a beautiful gift for me: a Vera Bradley duffel bag. Wow. So dang nice! She broke me out of the hospital for a couple of hours while we went for a nice lunch and a pedi:) Fun! Thanks Sally! You, Janet and the kids at Warren are making us feel so special! Special thanks to Elle, Claire, Madi, Eszter, Daz, Jr, Roman, and the whole gang!!! You kids just prove it that it's cool to care! xoxo
5 comments:
"Team Hans" has perfect timing! Big-hearted individuals coming together in support of Hans and Family! Thank you!
Lara, your insights continue to work miracles for Hans, as do Stephanie's keen culinary choices!
Love,
Aunt Susy
Glad to hear Hans had a good day! I didn't see spaghetti tacos on his menu...2 tacos 3 times a day :) Guess he'll have to look forward to those when he gets home! Love how Elle's school is there for Hans, for Elle and for you...awesome!
Love, hugs and prayers,
Aunt Holly and Uncle Michael
Hans is ALWAYS tough!! He is an amazing little fighter.
Glad you got some much deserved pampering too! Will be nice for Kev and Elle to join you tonight.
Love,
G.Kathy XOXO
So glad to hear his appetite is still strong. Gma S. seems to have all the right choices. And I, too, am happy you got a little spoiling. You so deserve it. Continued grace and prayers surrounding you from E'burg and my facebook prayer circle!! Hugs - Wendi
I am glad Hans had a good day with his favorite foods and legos. His favorites sound just like Patrick's. Legos are the greatest invention! Always thinking of you all.
Love & Prayers
Claire
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