Day +54 (Today)
Bella has 2 very important tests coming up, one was done today. They are blood tests from her Immunologist and one from her BMT team. Both tests use her blood for a "panel" of results that they look at. One is looking at her Lymphosyte counts and the other is her Immune Recon Panel. As I had mentioned in an earlier post, Bella's current blood counts and results are very good, so good that they show signs that have her doctors thinking they may be able to see her T cells and Bcells functioning together already. It is usually too early in the transplant process to tell this right now, (in most cases 2 months too early) but the doctors are going ahead with testing it now anyway cause they may just see the evidence this early in Bella's case! So that's exciting rare news.
I'll share the exact results hopefully later this week.
Day +45
So Bella was officially off of all IV meds for post transplant and doing very well. Recently because of on and off low grade fevers at night for the last 2 weeks, she's been on IV antibiotics. Not a big deal but basically, because the blood cultures are coming back negative (thank God!) they are pretty sure it's been mainly teething fevers. They just have to be so extremely cautious, that for any fever over 37.5, they automatically put her on antibiotics. She is still infection free, no bacteria, and very happy and energetic. Them teeth are pop'n through tho!
Day +45
On a sad note, Bella's eating has gone down hill. I'm really upset about it and quite often feel really deflated about it all. Our OT has been so good and is helping Lyle and I help Bella with her feeding, but after all we have tried, I'm just staring at a brick wall with this right now. All the foods she loved to naw on before, she won't even let me put near her anymore. We've been told to give her a break from trying everything so that we arn't 'pushing' her and making it worse. It's been a solid 2 weeks now since she won't even accept or hold food that I offer her. We'll see how this week goes.
Recently Bella's Gtube feeds have been going very well and she is back to tolerating 1hr bolus feeds. She hasn't been there since January I think. So her bowel motility is really good, she's not sick from too much too fast and she also has an anti-nausea med that is really helping her aswell. One of her meds (Cyclosporn) causes her to feel really icky so the regular use of this anti-nausea med eliminated that right away! So now she can handle 90mL of formula in 1hr that means she's off tubes more often in a day aswell. And she's not getting sick from it being too much too fast. So far her system is doing good with 2 bolus feeds in a day. She still has continuous feeds running at night so she gets her required amount of nutrients in a day.
Day +53 She love love loves her sunglasses.
Seeing as these 2 important blood tests will show the doctors more about how awesome Bella's new immune system is building, that means they are talking more and more about discharging us. They also did more recent tests to see if she is still hanging on to those 2 viruses. Hopefully not but I'll find out this week. However, the RMH has talked about a special isolation protocol we can follow with Bella that is promising. So our chances of being able to stay at RMH (when we are discharged from hospital) are very good now. It will actually be similar protective protocol to what we will have to do for our house when we get Bella home home to Swift Current. So we will get some practice here in Calgary RMH for a few months first.
My YouTube Channel!
Here's why I did this:
It's the right time. I felt there was a need. I wanted to help.
Those are my main 3 reasons. For months and months I've sat for hours in Bella's hospital room and thought, "God, I am here for a reason, we are here for a higher reason. My energy is focused on helping Bella, my time here supports her, that's number one. But this extremely rare and unique circumstance we have been in has a higher calling... I know it."
For a while (what felt like forever) I just knew I needed to use this time in hospital for a greater purpose, there had to be. I didn't want this 2 year experience to just be That, and that's it. I just kept feeling like there has to be something I could do to help other parents in hospital with their little ones, giving what we have gone through. I finally thought to make videos on YouTube about tips and tricks I have learned. This would make it easy to share with other parents in hospital. Knowing nothing about YouTube, Lyle helped me a lot and we got the channel all set up. I'm still quite the rookie, saying the blog address wrong, and "um" a lot. Ha ha. But now that I can start to work on sharing my videos, all I want is to help some other mom or dad out there.
Here is a link to the first video I added to Hospital Mom Hacks:
Enjoy!
And share Hospital Mom Hacks with anyone who may need it. I'm also open to ideas for videos aswell. I just want our experience to help in anyway, and hopefully make other hospital parent's lives a little more stress free.
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