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.

Dr. Roland - NYU

After tons of waiting we finally got to see Dr. Roland at NYU. I decided to drive instead of taking the train since we had a 10am appointment. I thought it would be tough to take the train during rush hour. Also , finding a parking spot anywhere near a train station  is next to impossible. So we drove in. It is 30 miles from Julianna's daycare. I checked  it with the GPS. That is about an hour by train or a bit over two hours by car. Unless you are from this area you probably can't understand that, but it is reality.

I knew where a good street parking area is and it is only a block from NYU. There is no parking there from 8 am to 9 am due to sweeping. That means if you zoom up a bit after 9 you can score a spot. I lucked out and got one. Street parking is $7 for two hours and a garage is $20 for about the same amount of time. It is more than the money though, I am not comfortable giving my keys to the guys who run those garages. Anyone who has seen Ferris Bueller's Day Off  knows what they do to the cars.

We got to our appointment a bit early. I had already done all the paperwork because they sent it to me online. I had to pay ahead of time, $600. They don't take my insurance but I am hoping I will get something back if I send the receipt in.

We saw Dr. Roland and he examined Jack and looked at his ABR results. He said he appears to be a good candidate for cochlear implants but he will have to get some imaging first (CT, MRI). He said it does not appear that Jack has genetic deafness and it is likely from an ototoxic event. In Jack's case that is the simultaneous administration of gentamicin and lasix. We will still do genetic testing to rule out that unlikely possibility, but no one seems to think it is likely.

He did feel that we should get Jack hearing aids. Although he does not think they will help him hear, he thought it would help keep his nerves stimulated. I asked him what the timeline would be for Jack having surgery. He said there is almost no wait for him, but I would have a wait getting into the NYU Cochlear Implant Center where they will do the imaging. After the imaging we will have to decide what type of equipment will be best for Jack and, secure approval from my medical insurance company. So it might be a few months before he can have surgery.

I left Dr. Roland's office feeling pretty confident that he will be able to help Jack. I called the NYU Cochlear Implant Center for an appointment and had to leave a message. I am hoping they will get back to me soon because I would really like to get it all set up.

Tomorrow we are off to Oregon for a family reunion. We are pretty psyched about it! I am hoping it isn't too bad flying so far with both kids. We shall see.