Skylar is doing so much better! Thank you for all of the prayers and encouragement!
When we got in the hospital, we put her on the new bi-pap machine and thought we'd be out in a day or two. While we were here, we wanted to get a few other things looked at as well so we didn't have to make multiple trips to different doctor's offices at a later date. When we met with GI and realized that we could leave her g-tube alone, we also talked about her nutrition.
We knew that as a big girl, being 19.5 months old and still on infant formula was not the best thing. However, we didn't want to start changing things without proper guidance. I had been working with Dr. Swoboda's team in Utah, but hadn't heard back anything due to a miscommunication - not a big deal and has since been resolved. We felt confident using the nutritionist here and also the GI doc (both very nice and educated on SMA).
We changed up her formula to a "big-girl" formula, but that is when the fever hit. I asked a few different doctors if the feed change could have caused the fever and everyone told me no - it is completely unrelated. We ran a bunch of tests and so far everything has come back negative - we're still waiting on a few more to come back, but we're not suspecting anything. We switched back to the formula we were on originally and the fever has gone away and she's back to her normal self. We're still on 10 days of antibiotics just in case, but we're confident we are going to be stable. Yesterday was our first normal day and today has been great - we really hope to go home tomorrow!
After talking to the nutritionist in Utah, she has actually seen several SMA kids develop fever and high heart rates as a result of an intolerance to formula. Who knew! We have a game plan once we get home and comfortable again, but for now, we're holding steady.
This week, we've had the pleasure of meeting many new nurses and doctors, but we've also had a great time visiting with old "friends" as well. Estrella, the nurse who put on the SMA conference and came to Skylar's 1 year birthday party, has been working the past couple days as our nurse, which has been amazing. I don't have to worry about a thing! We also have had some amazing RTs (respiratory therapists) and other staff too. I am so excited about the progress being made in SMA education here at Scottish Rite and hope we can help spread it even further. As much as I want to go home, we've had a nice time here - as nice as a hospital stay can be.
Anyway, the only reason we would not go home tomorrow is if our home health care company refuses to work on a holiday weekend (which they staff people for and should be able to take care of us)... In that case, we would be here until Tuesday. So far, the home health care company has been great with our equipment and bringing it here to the hospital. We hope to have more good things to say about them! I'll hopefully have an update about that tomorrow.
As far as the home makeover, I've been a roller coaster of emotions, but after having some people attend the pep rally, we're positive it is not us. Thank you for everyone who has supported us and helped us through this journey. We're still not giving up hope for our house - extreme makeover tv show or not. Who knows, maybe we can put together our own extreme makeover with enough support.
Well, that's all I have for now. More to come soon! Have a great 4th of July weekend!!!