Hiccup
Well let's start with that little "hiccup" (2 months post discharge from hospital) that we had to deal with last night. Bella's been cut'n some major molars lately, she had a great Wednesday, and may or may not of had lobster touch her garlic toast for supper last night. Whatever it was she got rid of it fast and that's awesome news! But I was quite the mess last night running around like a chicken with its head cut off. I wanted to get her to a doc so fast I didn't even put on shoes to drive her to the hospital. I didn't even realize till I was walking down the hospital hallway in my socks. This was the first time Bella has puked since April! And that was transplant related.
This was randomness out of the blue and the docs still arn't sure why. After 8pm she had 5 bouts of emisis and after the 2nd one, when I called back again, they said bring her in. No temp, happy and smiling at the doc... Another big puke and slept sound after midnight. She never even got dehydrated but they gave her fluids anyway and some gravol. She did have more poops then normal too. They also set her NPO (not allowed to eat) so she woke up quite hungry this morning. They took blood and stool. The first set of results came back negative for everything they tested. So we'll see what the rest shows in a few days. For now, she's back to her self, she's been eating and happy.
The flood of feelings that came though, as I panicked really was more than I was prepared for. Tears came fast but I was quickly relieved because I know we are still in Calgary, accross the street from the specialists that can see her within minutes. More relief came knowing that she rid'd whatever this was on her own and all I really needed to do was stop her feeds and give her Pedialyte water. All in all this was like a practice hiccup showing me she is going to be just fine when we actually get to go back home to Swift Current.
More Immune Panel Test Results
Bella's Chimerism test results show she is still 100% donor cells!! Yay! This is the best news regarding her growing immune system. Her NK-100% donor, Bcells- 100% and her Tcells-97% (less than 95% they consider mixed donor and recipient)
So 100% donor cells is so awesome at the 3month post BMT mark. Like I've mentioned in other posts this means a working immune system for Bella and no extra treatments needed to fix a "mixed cell" issue.
Her docs are so happy with her progress they took her next large panel blood work a week early too! (July 21st instead of the 30th) So not as long of a wait for the next check of those Tcells that need to bulk up more (CD3).
The immune system is made up of a whole bunch of different cells that fight sickness. Bella's Nutraphils are already in fighting mode and she is able to combat any skin infection or fungal, skin bacteria! This came when I asked if we should think of switching from her Peg Gtube (long tube that comes out of her tummy to feed her) to a MkeyGtube (just a button on the tummy for feeds, no long tube). The pEG tube she has now can slide up and down and cause skin irritation at the site and what I thought, could bring on infection. It hasn't, but I worry about it happening. Bella's doc said not to worry bout that for 2 reasons: 1. Her Nutraphils could fight it and not allow skin infection and 2. She's eating so well she could go from PegGtube to no Gtube sooner than we think!! I like those reasons. :)
When it comes to those Tcells that we want bulky enough, it's because those are going to be the big guns that fight the viruses. These guys need to eat their Wheaties and pump iron to fight viral and other major infections like PJP. So they are in the gym right now, bulking up and will come out when they are big and ready. And her doc explained it like this. The number count of these guys is one thing and their function is another. Yes, we wait on numbers from monthly blood panels and they have to hit a certain number for Bella's docs to be ok with her going into possible virus catching scenarios...
But that number will also always be a little "off" while she is on the med cyclosporine. These cell's function won't be at their true best until Bella is off this med for 3-4 months. This will be when she is 2 years and 7months old. (She is currently 19 months old)
Bella's next big Immune Panel blood work should now happen mid August.
New Feeding/Eating Plan
Before Bella's hiccup last night I was quite excited about the new plan for her eating! We still have it in place but it'll be a bit delayed. The plan is, because Bella is doing so well with her eating her dietician recommended taking off one of her 5 Gtube pump feeds and starting a food diary. So I track what she eats by mouth to essentially count her calories. She may actually be eating enough to take off 2 of her 5 Gtube formula feeds! This is amazing news! This means less time hooked up to a pump to get the calories she needs to grow!
But now because of last night we arnt going to start this tomorrow like originally planned. I need to slowly get Bella's tummy back to handling what it did before they made her NPO (no food) for 15 hours. But that should be done in the next couple days and I'm going to start tracking her food eating anyway. Our docs/dietician also want to try changing Bella to a more normal formula next week! Right now she's on Neocate Junior. The most broken down formula for a baby's system. It can't get any easier to digest. But this formula is also extremely expensive. I'm praying her bowels allow her to stay off of motility meds and do well with the transition to a more regular formula.
Current Meds
Bella is still on a lot of medications. Seven to be exact. She has her major one, Cyclosporine. This is the big immune supressent that prevents GVHD. They keep this dose at a certain level so that her new donor cells don't come charging in too fast or too slow, but just right...growing those Tcells at the right pace.
She is on Ondanzitron to help against the nausea that cyclosporine can bring.
She also has 3 different profolactic meds on board to prevent any fungal, viral or pneumonia. Vitamin D (like any Canadian kid) and lastly, a med that controls her blood pressure because cyclosporine can cause higher bp as well. They want to be conservative with this bp med as not to strain her heart or cause any hypertension on her heart.
These awesome photos I've posted lately are the result of my awesome "mom friend" in the house, Amanda, who has spoiled me with her talent. She snapped these while we took the kids for a walk one day.
Bella's wrist appointment was canceled for the second time. Sadly this issue is on delay because the specialist she needs to see is away because of some serious family issues that need to be dealt with and are keeping her from being able to be at work. Hopefully we'll get to see this specialist for Bella's wrist in August.
Ronald McDonald House PALS Dogs program:
Come & Visit Us!
I think many of our friends and family may still be thinking Bella's on strict isolation, but she's not. Her docs have said at this point we can decide who can see her, for sure. We just need to screen you first! But honestly, if it's even for ten minutes, a quick visit makes our day. It also gives Bella and I something to do now that her clinic visits are down to once a week!
We would love to see more friends and family. She is just not allowed to play with any kids yet. And when we screen you this means that you are obviously not sick, or been around anyone sick or been around anyone with recent vaccines. So by all means come say hi! The weather is nice and we can sit out on the back RMH patio and have a coffee.
Also, if you're in Swifty, give my mom a big kiss and hug for me. She just had major major knee replacement surgery and of course can not make it to Calgary just yet. I know she's missing her granddaughter big time. I miss you too mom. I love how much relief you bring me when you come to Calgary and help me with Bella. Love you mom.
Daily Afternoon Randomness
Don't Forget!
- Get your cheek swab kit from OneMatch and be a registered donor!
- Promote SCID awareness
- check out Bella's Facebook page, "Isabella's Mustard Seed"
- My YouTube channel "Hospital Mom Hacks" has 3 new videos to help with Gtube care and 20 vids total now!
-Keep fit and have fun. :)
I read your blog on daily basis. This is really great and informative post. Thanks for sharing.
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