Another roller coaster day

Today was a day full of conversations with doctors and therapists. When I came in this morning, Emma started her heavy, labored breathing. The PICU doctor heard it and saw how hard she was working and said, now THIS is when she needs breathing treatments. She was getting all bent out of shape, so my mom started holding her and rocking her. My mom also gave her the breathing treatment; as this was going on, Emma started choking on her spit again, and everybody panicked...again. Then we put her in the bed, and she choked again, about 30 minutes later. It's the most horrifying noise and sight you can imagine, and we now know that she may always do that.

The PICU doctor and then Dr. Troup talked to us about what's going on with her. From what they can tell at the moment, Emma's throat muscles don't work like they're supposed to. We've been told by several people that swallowing liquid is one of the most complicated, exact sciences that our bodies perform. Here's Dr. Troup's analogy: when you drop a piece of meat on the floor, it stays together. When you drop a glob of water on the floor, it goes everywhere. So when you swallow a liquid, the muscles have to operate in a very exact, acute fashion to keep that liquid all together. Emma's muscles don't do that, and she aspirates some liquid into her lungs. This muscle disfunction is a result of a neurological problem. The doctors still don't know what EXACTLY caused her to stop breathing, but now they think that she was aspirating enough formula and spit, plus she may have been phlegmy, and who knows what else...that basically formed the perfect storm and made her throat clamp together. Emma can't swallow anything thin like that very well, which is why she's been choking on nothing - she can't really swallow her spit. They're also going to do a reflux study tomorrow hopefully (an MII...MMI...?) to see if she has bad reflux. If she does, this could also contribute to her throat closing up.

There's nothing they can do to fix this problem. The good news is that she can possibly grow out of it...but it's not quite that easy. You can't fix a neurological problem; you can only hope that therapy will help it. Dr. Troup said that her Chiari malformation is the most unique and unseen one that he could imagine; he's never seen anything like it or heard of it in a book or at a seminar...ever. He knows it has to be decompressed, but he wants to see another swallow study in a couple weeks. Having the ventilator in for 5 days can affect her ability to swallow, so yesterday's swallow study isn't a good baseline for him to compare to a post-surgery swallow study. After the next swallow study in a couple weeks, if it's not much better, he'll do the decompression soon after, like a month from now. If the swallow study is better in 2 weeks, he may wait another 6 or 8 weeks to do the decompression and then compare the swallowing function. The Chiari surgery won't necessarily help her swallowing function, but it's a possibility. Even if it does, we won't see an immediate difference. It will still take time for that to take effect. So...in the meantime, we have to prevent Emma from getting a cold or anything that's going to cause excessive secretions. She WILL choke on them, and her throat WILL close up again. We were assured today that if she gets a cold, she WILL be back in the hospital. If you want something specific to pray for, please pray that she stays healthy and that the Chiari malformation is causing some swallowing difficulty that can be relieved by the decompression surgery. Unfortunately, we may be keeping Emma in a figurative bubble - DEFINITELY no children around her, and she'll just stay home all the time. For a long time. The really unfortunate thing, too, is that we're going to have to limit her visitors. We will have to be more diligent with 15-second handwashing, constantly wiping down hand surfaces (door knobs, switch plates, handles, etc.), and keeping our own selves healthy.

Emma has started eating from her bottle again today and has done really well. The formula is as thick as baby food that's spoon fed, but she takes it like a champ. Our pudgy girl loves her food. One problem we came across this evening is that she gets mad when you take the bottle out, and her saliva glands are really working from eating. So when you take the bottle out, she's salivating, crying, breathing heavy...which leads to...you guessed it, choking. Sigh. I know it sounds like we can get this under control, but when she chokes, her oxygen level tanks, and you feel like you're watching your child die. The scary thing is that maybe one day we WILL watch her stop breathing from this.

I know that all of this today sounds like great developments...but there's still a lot of scary stuff. If she has to keep coming back to the hospital, there's a chance she wouldn't be able to eat orally for a while and have to have a G-tube in her stomach to feed her some of the time. There's even a chance of a temporary trach to let her breathe if it gets bad. These are horrifying things for any person to go through...which leads me back to my point - if God is going to take her, just take her. Just take her with you, God, so that she can be happy with you, with no breathing tubes, or feeding tubes and where she can walk and run and play in the perfect harmony and peace of Your home. It probably horrifies a lot of you to read this coming from a mother, but you have no idea what it's like to watch your child suffer and then imagine even more suffering for her. No idea.

We are just so desperate for prayer. So desperate. But let me assure all of you reading this blog - your love and prayers for our sweet baby are absolutely amazing. We feel God's love poured out through you every day, and there are no words to describe how blessed we feel by all of your prayers and love. Thank you.

Tonight I'll leave you with a picture of Emma snuggling with her friends. This was the strategic positioning of her binky. The binky is held in with a bulb aspirator, which the pink puppy is holding to prevent from rolling down the bed. The doll is keeping Emma from throwing her hand up and moving the binky contraption.