Depends on who you ask.
I am so happy the nurses have a sick sense of humor, too. The docs play serious, but I KNOW they laugh, too.
I have stopped even trying to keep a very serious-I know-what-you-are talking-about-look on my face anymore during rounds. Yesterday, I had to ask if it was Saturday. The doc said, “that’s a great question, Erin.” But he says that about all my questions. Nonni and I call him Doctor Hottie. (His name is Javier, and I get all weird when he stands next to me). MOVING right along.
I will focus today on a couple of funny things. At least I think they’re funny.
Last night was night something-something in ICU. I have been there every night and it has not been horrible because the care is exemplary. I can tell that ASHTON is starting to get FIRED up again…as in, LOOK OUT, Steroid BOY is about to make a comeback complete with eyes glued shut and grade 4 of 4 GvHd of the skin, gut and liver and horse tranquilizers. Kid was trying to get out of bed to go ICE SKATING and get ice cream and ice water this morning. ( Do y’all sense a theme here?)
I just want to get up and go to the ice skating parlor!
He has reverted a bit to babyhood. He is calling me mommy which he has not done in year because he copies L and B and they call me Mom. He also started asking for “milkies” which is what he called his baby bottle at age one.
I want Milkies!
He cant have it.
Are we at the Ronald McDonalds for Ice cream? Why isn’t there chocolate on this ice cream?
I want rice.
(Steroids stimulate hunger) His gut is just being tested w small amount of ng feeding (once) and ice chips galore. I felt we spent the whole night collecting feces and spooning ice in to his mouth.
When Nonni came in this morning she asked if she could go ice skating, too. He begrudgingly said, yes. I don’t think I’m invited.
I’m only good for dressing changes which I can barely stomach. If I were the actual queen of munchkinland, of course I would drop a house on all cancer FIRST. Then I would go to every hospital, beginning with the children’s and wave my magic wand ( and I’d wear a killer dress) and I would eradicate every cell that fucks with every child’s body, fix their tummies, fix their skin, organs, buy them big, juicy burgers and milkshakes and open the gates of hospital jail. FREE!!!
As for Ash, there is talk of him moving back to BMT tomorrow. Our fear is that we cannot care for him there. ICU is germ city. BMT is strict. If his respiratory is stable enough today, we will likely go back to bmt but under a higher level of care. But I have to be assured of that before he goes anywhere. I won’t touch him anywhere but his hands and face because I don’t want to hurt him and, granted I learned a lot, we all did, but this level of care is all over our heads.
Not going to even proof read. I am going to sleep.
I really don’t mean any disrespect at all and I know everyone means the best for our boy, but I would love to keep my facebook status’ and blog status’ as mine to share only. Feel ABSOLUTELY FREE to paraphrase. And I mean that. But I want my words to be mine, if ya get my drift.
Love to all of you who bother to read and follow my boy. Please send positive love and vibes to two who are kinda left out right now: my big kids.
~e
Lauri H.
Sending all things positive to L and B and you all….
Claire
Sounds like pretty good news, compared to before. I’m glad he’s talking and knows your there. I’ve been thinking about your older kiddos. When I was in the hospital or a students sibling is in the hospital it’s very difficult for them to focus on what’s their suppose to be focusing on. I hope their teachers are aware of situation and are understanding to their needs. I have faith that this is only making them stronger. In a way you guys being in a different state is a blessing (none of this is a blessing! but on the sunny side) for several reasons, one of which you get to focus on Ashton and not be worried about the others. Knowing they are being taken care of. Thoughts and prayer love and light surround you all day/night long.