G-tube

So my previous post was about things my son would eat...oh if only it was that simple.

Andrew has been doing a ton of coughing lately, and mostly getting choked up when he drinks, and occasionally when he eats. Jason and I have run through many ideas as to why he would be doing this. One thought was that he has allergies and maybe he's getting choked up on mucus. Well, I had finally had enough and mentioned it to one of the docs I work with. We decided to put him on some prilosec (reflux meds) and get a swallow study. Yesterday morning, Children's Mercy called me to schedule his appt. on November 17th...

It was a long way away, but I thought, oh well, it's not emergent. They called back two hours later and told me they had a cancellation and wanted to know if I could come in that day. I headed downtown for a 1pm swallow study. Andrew did really great. He was starting to fuss during the procedure and I did all of the feeding. Essentially they have him swallow fluids of different consistencies and textures and eat foods that have barium in them so they show up on the screen. As I'm feeding my son, I hear the ladies in the room saying the words, "aspiration," "deep penetration." And I know what that means.

When we're all done, I'm holding my precious son and we start talking about what this means. They explain that for whatever reason, his epiglottis is not closing all the way when he swallows. It also looks like he might be holding his food in the back of his throat longer than he should be. I ask why this could be happening and all they can say is that it could be his nerves that run to his epiglottis are too slow, or something structural. Other tests would have to be done to determine why. So then I ask, worst case scenario, what are we going to be doing about it. I'm thinking that he will need really thick, cold foods for the next few months. But, I hear the words, "We think he needs a g-tube. He may need to be admitted right now."

WHAT?? I start to tear up a little. We decide to go home and let the doctors tell us what to do. After doing a lot of talking we determine to stay home the weekend and deal with this the first of next week. I know all about g-tubes, and honestly, they're not that big of a deal. For anyone who has had to take care of one, it's pretty simple, and doesn't interrupt life nearly at all. But my perfect looking child will be cut up and scarred, and I still don't know why.

That's what's killing us right now. We don't know why. Is it that he's had reflux so long it's worn away at his esophagus? Is there some sort of structural problem? Could he have some sort of neuromuscular deficiency (Please God, not that one)?

He looks perfect. He couldn't have been aspirating his whole life or he would have had some pneumonia's by now, and probably would not be thriving like he is. So why now? What changed?

We have an appointment early Tuesday morning with the surgery team who will be putting in the g-tube. At that point they will probably admit us. There are a plethora of tests that can be run to determine why this is happening. The g-tube may happen first and the testing later. We'll see. I'm scared. Jason is fighting the fear, but I think he's a little scared too. I know too much. I know what can happen if this is some sort of degenerative thing. My mind is automatically going to worst case scenario.

Please pray. Pray for our strength. Pray for healing for Andrew, answers from the doctors, wisdom to know what to do. Pray for Allie, that this won't affect her too much. That we would still be able to love her and give her the attention she deserves.

My in-laws are in town this weekend to help out while I work and Jason has class. They are able to stay most of the week. I praise God for that. I praise Him that we were able to get in so quickly. I praise Him for the wonderful chaplain I know who I met in the hallway on my way out of the clinic when I was crying. I praise Him for our wonderful family, for Andrew and how amazingly sweet and fun he is. And I just fall on my knees and pray that God would protect this child. Let him heal, let him grow, let him thrive...

Valerie