Going Home?

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!!!

Uncharted Territory

The doctor came in today and asked what we've done in the past when Skylar has had a fever and how she reacted. I told her we never have had a fever last more than a day and this was all new to me. She was surprised - obviously a good thing - and decided to start some antibiotics to try and attack whatever is lurking in her body.

We've run a couple of tests for different things and everything has come back negative, which I guess is a good thing, but we obviously know there is still a problem and can't find it... that's frustrating. I hate watching my little girl uncomfortable, in pain, not feeling well and standing by watching helplessly. I wish I could fix it and make it all better so she didn't have to suffer.

I'm so thankful for the staff at the TICU (Technology-ICU) here because they let me be involved as much or as little as I want. I have been doing a lot of the respiratory treatments and helping with a few other things, but it's so nice to have a staff who respects us as parents and caregivers even though we don't have a degree in nursing or a specialty practice.

Kyle came up last night to bring me dinner and bring a lot of Skylar's favorite movies from home since we're going to be staying here longer. I am so thankful we live close to the hospital and Kyle can come hang out when he's not working. Also, family and several friends have come by to bring me meals and other fun goodies - so amazing! We're so blessed.

So for now, we're preparing to camp out at the hospital throughout the weekend and see what Skylar does. We've switched her feeds back to the stuff we were on at home since it's not good to implement changes during an illness. We'll hopefully get this fever under control and see if we can bust out of here!

Hope you have a great weekend!

Hospital Update

Well, we were smooth sailing yesterday and thought we would be going home today... However, sometime during the night, Skylar developed a fever and was not sleeping well - and by that I mean that she was asleep, but her heart rate was still really high so it was not a restful sleep.

I've been wanting to update all morning and afternoon, but the internet has been down. So here I am.

We've been giving her Tylenol and she's been trying to get some sleep, but she's still kinda uncomfortable. We're trying to figure out the cause of it... We switched her formula last night to the big girl formula and she didn't digest it really well, but that wouldn't cause the fever. We've lowered the rate of her feeds to give her belly a break in hopes that she'll slowly adjust to the new formula and will continue to keep working back up to her normal rate. In the meantime, we have a few ideas as to what could be causing her fever, but have to do some testing and won't know until tonight or tomorrow.

I'll keep you posted.

In other news, we actually heard that there is a family near Madison, GA who might be a finalist in the Extreme Makeover so we're no longer holding our breath to hear Ty on the 10th of July. However, we're not giving up hope completely and obviously would still love for the family chosen to be us! If it's not us, you can find me at our local yogurt shop indulging in some comfort food :)

More updates soon... peace.