I am struggling today. For some reason, I woke up just dreading it. I felt like a 2 year old, with this running through my mind:
I don’t want to. I don’t want to sit in the waiting rooms. I don’t want to explain Kiran’s medical history. I don’t want to go through the tests. I don’t want to potentially get bad news. I don’t want to have to take scary steps forward. I don’t want to.
I’m overwhelmed already, and we only have one appointment of three behind us. Here’s the new news:
I haven’t talked about Kiran’s hearing in awhile. It has been the least of my concerns, but we have been doing follow-up checks with the AEA in town. You may or may not remember, he didn’t pass his newborn screening or completely pass his first check afterwards. He has passed two tests since. I don’t have any huge concerns with his hearing, but obviously we want to keep an ear on it (see what I did there? I still have jokes).
Today, we were told we have ruled out everything except minor hearing loss. She said though this doesn’t sound especially concerning, it is still something we would want to be aware of and could affect how we care for him moving forward. She wants us to have his hearing checked again in 2-3 months (I will wait 3, give him a chance to catch up more developmentally in all areas). We can do the recheck either here at the Center of Disabilities and Development (where we were today) or at the AEA as we have been.
If the results are still questionable in three months, she said it will be time for us to strongly consider doing the sedated hearing test. Of course. My heart immediately goes into a panic when I hear that – and it would be general anesthesia (well, in his case, I am assuming with a cardiac anesthesiologist) going completely under.
We got lucky with the first of three lung perfusion scans Kiran needs this year. As he is getting older and more active with his movements, I am willing to bet we may not be as lucky the next two times. Two possible sedations. We need to get an MRI scheduled and take a look at what is going on in his brain, not only for vision but for other information (I still have this sense this will give us some answers). And now, the hearing test. Not to mention he will have to go under for a cath in September to more thoroughly check on his heart function and mapcas post-surgery.
Some of these can hopefully be coordinated, and I will fight like hell to make sure he only goes under as few times as absolutely necessary. But it’s scary. Every time. And overwhelming. Every. Time.