Ugh! Alright. I have been dragging my feet. The prospect of VOD is kinda freaking me out. Gregory had a two hours of temperatures below the “danger zone” (Thank you, Top Gun). Then it decided to climb back up. A little bit ago, it was 38.9 C ( 102 F). His heart rate is climbing, too and I think it has yet to peak.
Today’s Counts: HCT ~ 30.6, Platelets ~ 23, ANC & White ~ still zero, Weight ~ 13K
He is still showing negative for any infection/bacteria via the blood cultures that are taken every 24 hours. We entered Day 4, this afternoon, so we will have cultures again at 3:00 tomorrow. He was extremely cranky and irritable today. He was up fairly late, last night and I’m hoping that today’s mood was due to that. If it continues tomorrow, we will be bumping his Morphine, again. He is developing new sores in his mouth, yet he is taking small sips of fluids and wants so desperately to eat. He had a few nibbles of an apple slice, today. Which all-in-all is quite amazing. Typically, kids at this stage have absolutely zero interest in food. Today he had platelets, Lasix & red cells. They are treating him AS IF he has VOD. This treatment is prophylactic. They are keeping his Hematocrit above 30. I guess by beefing up the red cells, it encourages the vessels around the liver to conitinue to process fluids through it. They have replaced his Normal Saline (which runs 24/7 and buffers his meds) with a Dextrose solution. Keeping his sodium levels lower decreases the risk of fluid retention. He is receiving Lasix whenever his input/output are not level. Or we have a jump in weight. They are not saying he has it, it’s simply precautionary.
I found out the other day that the attendings are on a two week rotation. It used to be four. So……. we lose Dr Manley this Sunday. He is an awesome doc. All around really good guy. Thankfully our PA, Joan Suver, stays until the sixth (?) of July. I really like her, too.
Gregory was up for most of the day today, too. This eveing he asked to wear one of his hats. *giggle* I was beaming with a little bit o’ pride. He looks like such a Hipster!
On his hairloss: I have been lucky. I have had nearly four months to get my head around all the baggage that comes with the vision of a bald cancer kid. I wasn’t exactly sure how it would hit me, though. Thankfully the eyebrows and eyelashes will take longer to come out. That will be a whole other look. I still cannot get over how cute he is!!! Here we are, snugglin’.
We webcam’d with the sibs today and Gregory came to life. Like wow! He was giggling, goofing and making faces. Lots of blowing kisses and blowing hugs. He knows they are coming, but he won’t really get it until they are here. They are going to want to mosh all over one another and I NEED to prevent that. Despite the fact that they are family, they are still school aged and habour all kinds of microbes that could prove to be a really bad thing for Gregory. With absolutely no immune system, I CANNOT be too careful. Which means that I am even afraid to get too close. What if they pass it to me, then I pass it to Gregory? That would suck. Which also means that for now, I don’t feel comfortable taking the OffSpring to crowded, enclosed stuff. Like the aquarium or a movie. ‘Cause I could still catch something and bring it back to the hospital. I also do not want to be too far from the hospital. I am planning on spending a few hours with them in the morning and agian in the later part of the day, each day that they are here. We can do things that are close. There really is a lot to do. They will make another trip when we are outpatient. We can possibly go to an attraction, at that time. One stop that is a “must do” is Beth’s Cafe. Best greasy spoon. EVAR!
This is getting wordy and I’d like to snuggle. ’til later. Gotta jet!
- Music:Imogen Heap ~ Hide and Seek