The Marinellos

Tuesday, August 23, 2011

Tubes

So July 7th Seth was due for a new set of tubes and another ABR hearing test. I was really unsure about going through with the surgery because of the cold that he had and how bad his breathing can get. They kept telling me that he would be fine for surgery so I decided I would go down there just to prove them wrong. So Thursday morning I had to get up and get him to the hospital by 5:30 cause the surgery was at 7am. I was totally waiting for them to send me home but he ended up not having a fever at all just sounded really congested. It just so happened that the anesthesiologist worked many years with my mom and he came in a talked with me and said that he would actually intubate him and give him 2 breathing treatments before the surgery. Normally with a 5 min surgery they would just knock him out but because of his situation and the fact that he was already so congested they decided to intubate him plus the hearing test would be about an hour and he has to be under for that as well.

So about 7:10am they took him back and sent me into the waiting room. I saw the doctor walking around 10 mins later so I knew that they have moved on to the hearing test and were done with the tubes. I knew the hearing test itself was about an hour so around 8:30am at the latest I thought that they would be done but NOPE. The came 9am and still nothing so by this point I am getting worried and thinking either the hearing test is not going well or something else is going on. By 9:45am the doctor finally came out and sat next to me and said, "He has profound hearing loss in the left ear. The right ear is perfect and he should be able to develop speech just fine." I lost it and started bawling he basically just handed me a box of tissues and said I am a guy and not good with this stuff. I was a mess and felt so bad that his hearing is going as well. I prayed all the time that if he is going to be blind please let him keep his hearing. It was a very hard blow and something that I still have a hard time with. I went back and saw him as soon as they let me and he was so not happy. The nurse said that he had some issues after surgery with breathing and his O2 at 82 but after they suctioned him he went back to 97. The doctor came back in and I had a few questions for him. I asked about the possibility of hearing aids and if he thinks the hearing will leave his right ear as well. He said that we can for sure aid him but that when he turns 4 he would like to do a BAHA (bone anchored hearing aid) basically he described it...they would go in a place a titanium implant into his skull and then he would have a little button on the outside of his head by his ear and the hearing aid would transmit the vibrations to the good ear and make him hear. Kind of confusing but makes sense when they explain it :) He also said that he does not think he will lose the hearing in the right ear because he should already show signs or loss by now. I will not get my hopes up because I read so many stories of cmv kids randomly losing their hearing at all different ages...so I will just pray he keeps it and we are able to get the BAHA.

So we got to go home and went back to Dr Fucci a week later. He checked out his ear and explained his hearing loss a little more. Basically in right ear is perfect and in normal ranges for everything the left ear on the other hand is pretty bad. He said that Seth starts hearing sounds of trains or airplanes. So if I were to sit Seth next to a train he can barely start hearing that. The crazy thing is how fast his hearing left. I remember in the NICU hearing was perfect and then in April 2010 they did his first set of tubes and an ABR hearing test. I thought he said that it came back great but actually he was already at slight hearing loss in his left ear. Just before Christmas I noticed him always holding things up to his right ear and for a little bit I though oh no his hearing is gone from the left but he would always hear the quietest things so I thought maybe he rather hold things up to that ear and not his left. I should have known something was going on.

If you think about it please pray for Seth that they hearing does not leave his right ear and pray for me that I keep up the strength cause this road is hard and I do get tired!

1 comment:

  1. Oh Melissa, I'm certain you're tired. You are such a strong warrior for your sweet Seth. I'm so sorry about his left ear. We'll definitely be praying for his right. Such a hard road you're on. We pray for you.

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