Friday, May 20, 2011


Yesterday started off a bit rough. I was feeling like we were taking a step backward with the whole feeding tube thing. Plus Annabelle can't seem to go 24 hours without a fever. I knew she would be better off with a feeding tube, but I also knew she would be freaked out about getting it put in. I had a Child Life Specialist come in to talk with her about it beforehand and she didn't want anything to do with it. I really think she is the type that you just do it and get it over with. None of this chit chat for hours and all that. They did give her some Ativan before to calm her a bit, which helped some, but she still wasn't impressed! But now that it is in, it's no big deal. Now she is getting some nourishment and she already has more energy. It was definitely the right choice.

Her hair is almost gone now. I wish I could just shave it off but she is not interested in that. So for now it's still a big mess all over her bedding and she hates it. She's constantly reaching a hand over the edge of her bed and whining "Get this hair off of me!" But soon enough she'll be a bald beauty. My bald beauty.

Like I mentioned, she is still fevering at random. All of the blood cultures are still negative and they can't find any reason for the fevers, but it isn't unusual either. The best news came this morning when we got her blood counts back. The last few days her ANC has been zero. Today it was 200! She actually HAS a count now! Yesterday her red count was right on the border for needing a transfusion (23.8) but they decided to give her another day. Today it was up to 30! Her platelets are also at a great number. This morning they were actually hopeful that her ANC would be high enough tomorrow to start chemo again. That would be right on track for her protocol. See, they used to do 21 day cycles, but 5 or 6 years ago they condensed a cycle to 14 days. Not everybody has the counts they need to be able to start the next cycle after 14 days, but the research shows that the more condensed the treatment, the higher the cure rate. So her not being ready to go again at 14 days wasn't that big of a deal, but the possibility of it now is great! But even if her counts are good tomorrow, she fevered again at 10:00 tonight, so that delays things a bit.

And, yes, it is 11 o'clock at night and I am writing this post. After having Ativan yesterday she took quite the nap, which resulted in her staying up super late, which meant sleeping in late this morning, then a late nap while I was out this afternoon, so here we are again pulling a late nighter! It works out fine in the hospital but this schedule will never work outside the walls of PCMC so hopefully we can get back on our normal schedule before we get out of here! And in case you're wondering why I was out for a bit this afternoon......well, it's because I have the best husband ever who surprised me by setting me up with a spa appointment today! Jessica came to stay with Annabelle while I got a haircut, massage and a pedicure. He seriously spoiled me! And I got to experience life outside these hospital walls for a few hours. It was a nice break, but Salt Lake traffic is a bit much for this small town girl. (However, I am happy to report that I didn't get honked at at all today)


Holly T said...

I hope you don't think I'm weird and I don't even know how I found your blog, but I'm actually here at PCMC too with my little guy in the PICU for respiratory failure. You are so brave, it's such a scary thing to be here. Your husband is awesome for spoiling you! I'll add your little Annabelle to the 100s of prayers I say each day! You can blog stalk me too if you'd like :)

Jenny said...

I am soooo glad that Josh is such a good husband. I know my experience with hospitals is limited, but it is important to have some "me" time. It makes you better prepared to take care of Annabelle.
We still pray for her!