Update on Levi

Okay, first of all I would like to thank you all for your faithful prayers and uplifting words of encouragement. It truly is an amazing and comforting feeling to know that so many people are with us on this… still, even after two+ years.
Levi was so amazing through this entire procedure. He was all smiles, friendly and not afraid. We feel so very proud of him! We were waiting for 3 ½ hours before they took him. He hadn’t had anything to eat or drink since the night before, people were constantly coming into the room asking questions and explaining their part in the procedure. And, oh my gosh! I think that when it was over 10 people had to come and talk to us! But like I said before, he had smiles for every single one of them! It was very sweet and just what I needed.
The official report on Levi is… that there really isn’t one just yet! The gastro-Doctor took samplings of his esophagus to test for allergies and the pulmonary-Doctor took samplings from his lungs to check for possibly dangerous bacteria.
What we found out yesterday was:
1. His lungs look good, we need to wait and see if anything grows in the culture that they are doing, but so far this is not going to be a problem and will not slow the process down for the surgery to remove the trach tube.
2. The ENT said that there is still a lot of irritation and inflammation in his airway and that the narrowing of his airway is very significant, we already knew that. It’s still only about 2 mm in diameter. We did find out that this narrowing is 1 ½ cm deep. Not too good. But, it doesn’t really change that much. It’s pretty much the same surgery that we already knew he would need.
3. His reflux is still pretty bad. There are signs of damage in his esophagus and there is still a lot of irritation from it. Not good. What’s even worse is that it may be allergies. The reason that this would be really bad is that Levi has no outward sign of food allergies. Sometimes it is impossible to find out what one is allergic to and since the only sign of it is inside him, it makes it pretty hard to see if it’s getting better. He said that sometimes they take the 6 most common food allergies and then add them back one at a time to see which one it is. BUT, again, it’s inside his esophagus that we would need to see to know is something makes it worse or better. Anyway, we will have to wait on those tests to try to figure out a plan of action.
So, the report wasn’t what we hoped for. And although I am not trying to sound pessimistic, we were not surprised. Really we will have to have to wait for the results to come back and for our appointment on the 12th of February where we will discuss the plan of action.
Nothing has really changed, God is still in control, He has a plan, a perfect one. His timing is perfect, not ours but PERFECT and we are okay with that.
So, we do ask you to continue to pray for healing and restoration… I got to admit, it’s getting harder and harder to watch Levi wake up after being put under. He is such a happy boy and so sweet, it just really kills me for him to have to go through these things. I thought it was the hardest when he was tiny, but now that he kinda knows what’s going on, but not really, it’s even harder! He doesn’t understand why we take him to a hospital when he feels great and then he wakes up hurting and confused. This time he had a pH probe put in his nose(it was a little tube that went half way into his esophagus and was connected to a small computerized machine). He had to have it in for 24 hours to measure the amount of refluxing that he’s doing. Not fun… not fun at all! He had to have a brace on each arm to prevent him from bending his elbows and pulling the tube out of his nose. Anyway, this morning we went back to Vanderbuilt to get it out. Again, he did great!
We’re so glad that this is over for now. We need to rest…
Love you all!
Brian, Rochelle, Jesse and Levi


P.S. Jesse stayed with Bee-Bee and Papa-razzi (Brenda and Leland) and had a wonderful time!