Another roller coaster day...and not much to show for it

Today was so up and down, and I feel completely worn down by it. We're learning a little bit at a time how to prevent Emma from choking on her spit. We can't ever guarantee that it won't happen, but there are little tricks to help. You start to hear her throat get kinda junky and raspy, and you can pretty much bet that she will choke sometime soon. She needs to lie on her side, and she needs to be sucking down pure, thick formula so that her spit will mix in with the thick formula and not aspirate into her lungs. We have to try to keep her as calm as possible so that she doesn't get upset and create all these secretions - mucus, spit, etc. that will make her choke. Emma choked 4 times today, and they were absolutely excruciating. During one of these episodes, her heart skipped at least one beat, she turned a little blue, and her oxygen dropped.

They started a reflux test on Emma today. She has a small tube in her nose that runs from this little machine that sits in her bed all the way to the bottom of her esophagus. If she refluxes, the acid will come up and hit the bottom of the tube. The tube has some sort of pH reading on it...so if acid hits it, the pH level drops, and this little machine records that. There are all these explicit instructions we have to follow about pushing buttons and writing things down - when she's upright, when she's eating, when she's done eating, when we need to record an event like choking. We're really praying that she has bad reflux. I know that sounds strange, but bad reflux can contribute to her throat closing up. At least that's something they can give her medicine for. She wasn't a projectile puker, though, so it's probably not that bad. But we'll just see what the results say.

To top it all off, Emma's head has really started to sink in the middle. That means she has to stay flat when she's lying down so that the shunt won't drain so quickly. But she has to be fed completely upright. If she refluxes, she needs to be more upright in the bed. When she doesn't burp well, she needs to be more upright. So what do we do? We don't know.

Here's a small ray of sunshine: Emma's moving her legs exceptionally well, and we saw her move one of her feet completely independent from her leg. Dr. Troup is still surprised at how well she's moving her legs, considering the large amount of fluid that's sitting on her spinal cord. Isn't it interesting how all we've been praying for this whole time was for Emma to have such good movement in her legs...and she has had exceptional movement, all things considered. And how thankful we are for that! But here's the irony: I could care less if she was wheelchair-bound for sure, if it only meant that we wouldn't have to worry about aspirating her spit, mucus, and formula and choking to death when her throat clamps down. I know that God doesn't work like that - He doesn't make deals or trades, because He is almighty and can do it all...or do none of it.

Dr. Troup told us today that the further out we get from her apnea episodes, the better the doctors feel about the breathing NOT being a brain stem problem (which can't be corrected) and being more related to the swallowing issues (which may or may not be able to be corrected). However, the swallowing issues may be the type of thing that builds and builds and builds until she reaches a breaking point and then stops breathing...and then we start this whole process all over again. We can't do that forever.

So, as always, I'm asking for prayer. Specifically, please pray for mercy - that God will either take her so that she won't have to choke her way through life or that He will show us the ways to make her life easier and safer. Ok, REALLY specifically - please pray for Emma to not salivate so much when she eats. Isn't it weird to pray for such a specific and bizarre thing? After she eats, that saliva gets stuck in her throat, even if she does choke some of it up. I'm so afraid that she's pulling it into her lungs. And now we're starting to question her ability to cough - I feel certain that involves the muscles that Emma's not so great with.

Now if you REALLY want to pray...and I mean have yourself a little come-to-your-knees, intercessory, work-yourself-into-a-fit kind of prayer, pray for 2 other families in the PICU. One little boy is 5, and he fell from a tree between 6 and 10 feet in the air onto an asphalt parking lot and cracked his skull 6 inches. His brain is bleeding, and they think if he makes it, there will be SEVERE brain damage. The other family has a 5-month old who has a serious problem with his DNA, which, of course, can't be fixed. The hospital in Anderson didn't catch onto this and thought he had a stomach problem, so they put a G-tube in his stomach. Unfortunately, they punctured his stomach, and the contents of his stomach leaked into his abdominal cavity and gave him a blood infection. So now he is literally fighting for his life. Because of the DNA problem, there is literally NOTHING that medicine can do to help him - only our Savior can do this one.

I have always led such a blessed life, and I have always been thankful for all these blessings. Oh, how things have changed...I'm still blessed, believe me. But now it's almost embarrassing to think about the things that used to worry me and the things I used to pray so diligently for. God sure can give you some perspective on life. And I hate that perspective right now.