I've been shuffling my feet about posting updates....
Everything is going smoothly thus far today. The infusion began about 9am Wednesday and will go until about 5am Thursday. Esther's blood pressure has been stable all day. She's on a tiny amount of oxygen. The doc today joked her nasal cannula is actually a mouthal cannula because she's wearing it as far from her nose as possible. I keep joking with her about her mustache...she doesn't think I'm very funny. I don't blame her.
Tomorrow morning we will try to add the IL2 in addition to the chimeric and see how she does. Please pray for our nurse to be really keen to any coming issues and for her to be able to handle the slower rate without reacting.
Some comments about being in the ICU...
Yesterday I overhead a parent trying to convince the nurse that "we parents need to have something to take the edge off so we can be there for our kids." This parent was making this argument for about 30 minutes. Later in the day she was talking on the phone, while we were in the nourishment room (kitchenette) that they "have all the good stuff right here, so it wouldn't be too hard for them to give some to the parents too." Hmmm....
So did you know that this is the worlds largest airplane bathroom? It's about 150 square feet, except that the actual functioning part of the bathroom is still the regulation "must fit in a broom closet" size. Because this airplane bathroom does not come with a door, or walls for that matter, parents get to share a community bathroom.
I do not like shared bathrooms, I do not like them Sam I Am! Since becoming a germaphobe, I have been tip toeing to brush my teeth and shower and doing crazy things, like accidentally kicking over the trash can while trying to open up the laundry basket with my foot.
We had to share a bathroom for a while during Esther's transplant, but it was kept really clean and parents were better about keeping it clean. This one isn't kept up as well and has a rogue shower head that likes to pretend we are going European and sprays the entire bathroom. Oh well, I think I will add this to the list of things to discuss when I begin to talk about my feelings about germs when I enter germaphobia therapy.
The nurses down here are nice, but I think they don't know what to do with me. They work with such trauma that I'm sure it's a different experience to have a parent who is chatty. Sorry PICU nurses...you've got an extrovert who is really used to the hospital environment...I hope I'm not bugging you too much. So far we've had a recently engaged skier who used to be a traveling nurse (made me feel closer to you Tim and Amber), a retired Army nurse who told me all about some of the crazy things he did in the battlefields (the PICU must seem so mild), one amazing floating nurse who worked so hard the first night taking care of Esther's reaction she had to sleep in a sleep room before driving home, and the last couple nights we've had a sweet girl who grew up in the Air Force and got the itch to move to Colorado. She almost moved back to the East coast, but made the right choice because you know, Colorado has nice people and great outdoor activities.
Thank you for taking this trip with me on PICU Air where we have nice nurses, spacious bathrooms, and the occasional parent just looking for the good stuff.