Tuesday, January 26, 2010

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!

Tuesday, January 19, 2010

Prayer for Levi...

I feel a little bit selfish sending this update asking for prayer for Levi. With everything going on in Haiti, our problems seem so small. And we do have so much to be thankful for. We have two amazingly happy, healthy little boys.
Anyway, on Monday January 25th Levi will be having another procedure. Three different Doctors will be scoping his airway. It’s different from the ones he has had in the past. His regular ENT will be measuring the depth of the scar tissue in his airway, a Gastro-intestinal Doctor will be assessing the damage that his Reflux has caused and how bad it still is, and a Pulmonalogist will go deep into his lungs to check them(he will be ‘flushing‘ them to check and see what bacteria lives in them). Levi’s trache was described to me as a ‘highway for infection and bacteria’. We have been so blessed in that he was not had problems with this, but that doesn’t mean that bacteria doesn’t exist in his lungs. One of my main concerns is that his ENT Doctor said that he would not operate on Levi’s trachea if there is still MRSA bacteria in his lungs. This was the staph infection that they both got when they were a week old. The problem is that Levi did have this before in his lungs and still has problems every once in a while with pustules on his skin. The last one he had was really bad. The only way to get rid of this on your skin is to basically bathe in chlorine water for a week, at the same time you have to disinfect with bleach absolutely everything that you come in contact with… pretty much impossible! The other problem has been with the reflux. They can’t do any type of surgery on his airway if it will later get damaged by the acid reflux. We have thought that it’s been under control for the past year, but every time that Doctor Goudy(ENT) has looked at his airway there have been signs of irritation from it. It some times takes years to outgrow this and some people don’t.
Anyway, we are going in with no real expectations… Hoping for the best, yes… We know Who is in control and we also realize that no matter what happens on the 25th, we will be okay. I never thought I would get to this point, I feel like I’ve been fighting it for two years! But I now accept God’s will, even if it doesn’t mean that my son will be healed. God is good, He is perfect. We gave our lives to HIM, we will follow(or stay) where He wants us.
Thank you all so much for your prayers and Love,
God bless,
Brian and Rochelle