Monday, July 18, 2011

Daddy's Birthday Today!

So I am pretty sure Skylar is a Daddy's Girl... Not only did she save her teeth for Father's Day, but she's doing her best to get well for her Daddy's Birthday today!

Yesterday was the first day that we saw better heart rates, although we're still not out of the clear just yet. So far today, we're doing a little better and I have figured out that Skylar likes to sleep to Enya. I mean, who doesn't? We're giving Pandora radio a chance on the iPad right now and so far so good. Although as I type that, the pulse ox alarm went off because her oxygen dipped down too low.

As I think about what Skylar would be able to do as a 20-month old (as of tomorrow), I know she would probably love to give hugs, run around like a giant amongst friends (she's in the 92 percentile for height and not even on the chart for weight!) and would definitely be saying mommy and daddy by now. I can only imagine that she would be climbing on things like her dad - maybe even getting in to trouble too :) I bet she would squeal with delight if Kyle could pick her up and throw her in the air and catch her or chase her around the house. I know she would be a much more adventurous eater than me by now with the help of her dad. Who knows, she might even like garlic and rosemary!

But for now, we take as many "hand hugs" as we can get and as many smiles and giggles as we can earn (she makes you work extra hard for them). I wish I could read her thoughts... I know she would go on and on about her daddy and how she LOVES her new swing (pictures coming soon!), how she loves watching Kung Fu Panda with him and holding his hand. Even though she can't say it, I know she is thinking, "Happy Birthday Daddy, I love you! You're the best dad ever."

Sunday, July 17, 2011

The Big 2-0

On the 19th, Skylar will be 20 months old! It's so crazy how time flies... Daddy has a birthday on the 18th this month too :) We love you Kyle!

So I thought we were smooth sailing once we were home from the hospital, but Skylar has had a few issues come and go since we've been home.

The first happened a few days after being home when I vented her belly. I use a 60ml (2 ounce) syringe without the plunger in it, hook it up to her g-tube, and let air and left over belly fluids flow out. I will typically let all of the belly contents (aka residual) back in her belly. However, this time, a dark black brown liquid came out of her g-tube that looked like diarrhea and freaked me out. I did not let that go back in. I have seen white and clear contents (normal), and even yellow and green residual colors (not so normal) but black and brown?! I was immediately on the phone with our pediatrician and we both agreed that we'd start on pedialyte and go from there. What the heck did people do before pedialyte?!?!

The pedialyte seemed to clear things up and everything was back to normal again. Or so we thought. The past week, Skylar has had a really high heart rate, which is never good. It's usually a sign of discomfort and pain, and even the start of an illness. I think we're battling something right now. At first, I wrote off the high heart rate as a teething thing because there were no other symptoms. She was kind of congested, but no fever or anything else. Her belly was still digesting well and normal - that is, until yesterday when we got a batch of yellow residual. The good news is we have a symptom and a possible cause of the discomfort.

We've already increased her treatments to every four hours and do our best to make sure she's completely comfortable with tylenol around the clock. We're going to try a few things this week (new meds) and re-evaluate at the end of the week to see if anything improves or if we need to take a new course of action. We really really don't want to go back to the hospital so hopefully that won't be necessary.

I feel like I should mention the Extreme Home Makeover because a lot of people have asked about it. I first want to say that those little girls are extremely deserving of a new home and we are so happy that they are able to go to Disney and have this experience. We are definitely bummed, but have learned a lot through the entire process (over a year now) and are so thankful for the friends and family we have who support us. I hate to think where we would be without you so thanks! We will eventually build on the property we bought 3 years ago... Hopefully sooner than later! Stay tuned :)

Saturday, July 2, 2011

We're Home!!!

So this is going to be quick because I'm exhausted, but I wanted to let you know that we're home!!!

We were able to leave this evening and the Trilogy was so easy to travel with! We're so excited about using it more to get out on walks together and maybe even take that trip to the zoo I've been talking about for some time. Still working on it...

Skylar was a rockstar, as usual. She traveled really well and I think is really glad to be home. She's pretty much back to normal. We had some amazing nurses, fabulous RTs, and incredible doctors and truly think Scottish Rite TICU is the best place to stay if we have to be in the hospital.

We went all week without a bath and so as soon as we got home, Kyle and I bathed Skylar. She stayed off her bi-pap the whole time and even for an hour or so after her bath while Kyle and I unpacked her room and set things up for her. We finally raised her bed on cement blocks!!! Now we won't have to kill our backs and we can put more things under her bed. Nurse Natalie is probably smiling reading this...

Pediatric Specialists (our home health care company) came over to make sure we were set up with our equipment at home and that was wonderful. Once he left, we got Skylar back on her bi-pap, unpacked everything else, made dinner and now we're ready for bed. Reese dog missed us - he is laying across my foot as I type this and already tried to make out with me on the couch, lol. Have a great holiday weekend everyone!


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!!!