Today was a very very long day full of testing. Let's break it down...
Hearing test: Passed!
They checked his aorta again and their was no coarctation of the arch. That means that there was no more narrowing and he had good flow so they want our cardiologist to keep an eye on it but for now it looks good!
Diaphragm Study: To see if his diaphragm was damaged and causing the breathing issues.
How it is done:
Jacob had to lay on a table and they brought an xray machine over him and took pictures of his diaphragm moving. Jacob hated this. They needed him to cry and boy did he. I was squirming because I wanted to pick him up so bad but they needed to make sure that his diaphragm was not damaged during surgery.
Still waiting on the results but the cardiologist had told me the xray he had seen looked fine and they think the breathing is from the fact that he had a restricted atrial septum not due to the diaphragm. They did say that they saw his vocal cords were swollen and irritated and they were not closing all the way. They are not paralyzed but the acid could be the cause of the irritation.
Swallow Study: Purpose was to check for aspiration into the lungs
How it is done:
For this Jacob had to drink barium from a bottle and they watched via x-ray as the milk went down so they could see if he was aspirating into his lungs. It was really cool to watch. I could see his skeleton and watch him suck the milk and it go into his belly. He loved it and chugged the bottle. He was starving since they had not fed him for hours so he would probably have drank anything at that point.
No aspiration! But he has some acid reflux.
Milk Study: Purpose is to check for acid reflux
How it is done:
They mixed something in his breast milk that let them get an image of the milk in his belly. Gave him 60 ml's in 10 minutes. That is about 2 oz. Jake usually gets that much over an hour so I was afraid he would hurl but he did great. Actually it gave him a "full" feeling and he sleept the whole time... like a baby! His nurse said babies usually cry the whole time and she has never seen a baby do so good.
He does have mid to high level reflux. This could be the cause of the vocal cord irritation.
They have now scheduled a saliva study which also can check the relux.
The Next Step:
A team of doctors will get together and discuss all of the test results. They will see if they recommend sending us home with the ng feeding tube or having him go through surgery and get the g-tube.
It really depends on whether they think the reflux is bad enough. When they do the g-tube they also tie a band around the stomach and esophagus (don't quote me on that). The surgery makes it so that they can not reflux. If his acid reflux is causing the damage to the vocal cords we need to consider the g-tube to prevent perm. damage. If they don't think its causing the damage then he may be able to go home on the ng tube.
Either way he needs one of the tubes. He LOVES the bottle and takes it very well. The problem is that after about 15mls he is just too exhausted. He breathes so fast so when he is breathing he is working to hard and burning to many calories. The goal right now is to get him to gain weight for the second surgery. So we can give him some of a bottle but the rest has to go in by tube. I really don't want Jake to have to endure another surgery and am fighting for the ng tube. That being said, if it is safer for him to have a g-tube then we need to do that. The doctors will give us their opinion and we will go from there. I just want to make sure we try everything first. He is maxed out on reflux medicine so it all depends on these results.
Good news of the day:
We got a private room! Its a nice big room just for Jake. I can sleep there if I want too. Much better digs, although I still hope to be home soon.
If he goes home on the ng tube we may be home early next week. If he needs a g-tube then he will have at least 5 more days recovery after the surgery.
So yet another exhausting day but Jacob took it like a champ. I swear I am more and more amazed by this little guy. I can't wait until we are home and away from all of the tests, needles, and wires. He deserves some peace after all of this. I am grateful for the fact that he won't remember all of this. Although its hard for me to watch him endure so much, I know that it is all to give him the best possible life.
I am so proud of you Jacob. I love you so much and will always be by your side.
Please continue to pray for Jacob and all of his heart friends who continue to amaze us daily by their never ending strength.