Genetic Testing Results

The results for Jack's genetic testing came back and everything was negative. He did not have any of the connexin mutations. There is also a mitochondrial mutation that can make people more susceptable to gentamicin induced hearing loss. Jack was negative for this as well.

Everyone was pretty sure the drug interaction between the gentamicin and lasix caused Jack's deafness. However, they did say there was the slightest chance he could have had one of these genetic issues. I am glad he does not have any of these genetic issues, but it makes me pretty mad that they did this to him.Anyone who googles these two drugs can see that they should never be given together. I would also understand if there was no other option but to give him these drugs to keep hime alive, but that was not the case. He got the gentamicin (an aminoglycoside antibiotic) for a "rule out". That means he didn't have an infection, but they gave it to him just in case it came back that he did. He did not, and he never did.

A lot of hospitals are moving away from using gentamicin, especially in the NICU population. Here is an interesting article about that subject.  http://exutero2.wordpress.com/2010/12/16/why-we-use-zosyn-instead-of-ampicillin-and-gentimicin-at-tulane-lakeside/
A lot of places say they are still using it. They say it is a good drug because it is cheap and it is broad spectrum. In Jack's case it is certainly not cheap. The cochlear implants and associated therapy for his lifetime will certainly be in the millions. The implants alone will be $250,000. That is just one surgery.

I am currently trying to work out the financial part of his implant surgery. They are saying the insurance will cover only 80% of it because they are out of network. There is not anyone in network who does this surgery so I am hoping they will pick up more of it since 20% of it will be over $50,000. The NICU had also applied him for medicaid. He was eligible for despite my income because he was under 1200 grams. I am now trying to find out if that is still in effect and if not if there is any way I can get him on it. I am hearing conflicting information, but there are certain disabilities where Medicaid/SSI eligibility is automatic (such as being born at under 1200 grams) and some people are telling me deafness is one of those and some say it is not. I am waiting to find out officially.

Jack had a CT scan today to check the anatomy of his inner ear and to check the thickness of his temporal bone. He is having all types of testing done to make sure he will be a candidate for the cochlear implant. He was a good sport for the test despite the fact that he couldn't have a bottle after midnight last night. We were at the hospital a bit after 6 and he had the test about 7:30. They gave him a short acting sedative so he was awake and eating shortly after.