I am exhausted. And I have a head ache. McKinley's doctors appointments just seriously do me in. Then you add on, that I think she is cutting teeth, and decided that Craig and I needed to see every hour last night... and I think I could sleep for a couple of days.
McKinley's doctor days are kind of hard to explain... even though I dont think I am terribly stressed about them.. my body knows differently. So, even if the appointment ends with good news, I still feel like I have been hit by a train.
I told Craig today when we were heading separate ways, that this is going to be our life with McKinley.. and I have got to get control. She is young enough that she doesnt know that I am stressed.. one day she will.
So todays appointment.. I am still not sure if I consider it good or bad. I do know that it was not the appointment I was hoping for. I was hoping that she would pass her hearing tests with flying colors, and the doctor would come in and look in her one ear, tell us she is doing great, and that he would see us in a year. That did not happen.
Craig was able to go with us today, and I am SO glad that he did. It was his first time to meet the doctor and his first time to see McKinley do her hearing tests. I was a bit anxious about the hearing tests... not that she would pass.. but that she would be able to sit still and allow the tests to take place. As I mentioned, she barely slept last night, so I was also afraid that she would be in no mood for anyone and would have emotional fits. That girl can throw one when she is tired. Mom suggested that since other people would be there, maybe she would turn it on. Which is exactly what she did. My child LOVES social situations.
They first measure the pressure in her one ear (I dont know that I formulated that sentence correctly).. but the lady doing the tests said, well she still may not be able to hear many low tones today because she is experiencing alot of negative pressure. I did not think much of it, because she is cutting teeth, and has a snotty nose, so I thought maybe that was why.
We entered the big sound box and this time she did all of the sounds from McKinley's underdeveloped ear's side. McKinley sat in my lap, I was not able to respond at all to any sound I heard.. McKinley responded GREAT! The light up clown confused her some, but she soon realized when she got it right, the clown would light up and she would clap. Proud of herself. When we were allowed to exit the box, the lady told us that she did great and was hearing exactly where a child her age should be hearing. Good news.
Then we went to her office to do the piano test. I was most nervous about this. McKinley has to sit relatively still and they put a thing in her ear to measure how her brain reacts to noises. Its a noise like a piano when 2 keys are hit, you hear a 3rd key. They are measuring to hear if she hears the 3rd key. Again, she did awesome. The only problem was that the noises McKinley was hearing, made her need to dance. She mainly dances with her head, so her dancing would cause the thing to come out of her ear. But other than that, she did great. She heard what she needed to hear.
The lady mentioned that she really was thinking that McKinley probably has all of the ear parts, just no opening, because she is hearing so well from that side. That was a total encouragement to us. She did mention that she wanted to see if the doctor wanted to run this certain test, because she thought we would have even more answers then.
We go to the other side of the building to wait for the doctor.. McKinley entertained the 70+ year olds that go to see an otologist. :)
As soon as our doctor walks in the room, he says "ok well we are going to have some decisions to make" My heart sunk. I really really felt like I was not going to have to make medical decisions for McKinley, as far as her ear goes, until she was around 4. Basically, the extreme negative pressure that McKinley is experiencing is somewhat concerning. It means that things are not equalizing as it should (ok.. I really am not sure what either of those sentences mean, but thats what I was told). He thinks that come fall time, because of the negative pressure, McKinley could get alot of ear infections. And he also thinks that even though she is hearing well and passing the tests, the negative pressure could be causing hearing loss in her good ear. Our number 1 goal as far as her hearing is concerned, is doing everything we can to protect her one good ear. We want to minimize hearing loss in that ear as much as possible.
So what we have planned (although no date has been set), McKinley will have to go under anesthesia to get a brain stem hearing test done and a tube placed in her one ear. I am not sure what we do/ or if there is anything we can do to alleviate the negative pressure. I do think that they want to be proactive and put the tube in place, so that she does not get ear infections and we alleviate that risk for hearing loss. Thankfully, one of my best friends husbands is studying this exact thing in medical school (our doctor would love him to join his practice, in fact... yes, I have petitioned, so that my best friend does not have to move). So I will be picking their brains to find out more. After I left and called my mom, she asked if I was ok. My answer was (and remains the same at this point).. I am not sure. We discussed the surgery again where we would have to put a hearing aid through her brain.. I dont like talking about that.. and really thought that I wouldnt have to talk about it again for a couple of years. I do think that deep down, I thought that McKinley would end up with a tube in her ear. So I think I am ok with that. And if she is under already, they might as well do the brain stem hearing test to find out more information about McKinley's hearing. So I think I am ok (I need to be.. ha!.... these are the facts). So.. in the next couple of months.... baby girl will be having her next medical procedures. I know its "just tubes" or in our case tube. I am totally good with the putting in tubes.. its the anesthesia that I dont love. I can still hear her anesthesiologist before her omphalocele surgery telling me "its like flying a plane, sometimes you hit the runway, sometimes you dont". Encouraging huh. Just what you want to hear before you send your 3 day old daughter into a major surgery. This is just going to be a continuation of McKinley's story. And Craig and I's job as her parents will continue to be to pray daily for miraculous healing.. and continue to surround her with the best medical care. And thats what we will do! We will keep you updated. :)