Swallow and Hearing Test

SWALLOW/GAG TEST Wednesday March 16th

On Tuesday Koby had his test to determine the progress of his swallow and gag reflexes. They stopped the test pretty early on as he was aspirating with just 2ml of barium. The barium was going into his lungs rather quickly because he has a delayed swallow, and so they stopped the test as they realized that he isn't anywhere close to swallowing anything safely at this point. This wasn't a surprise as he hasn't had much interest in anything being in his mouth lately.

We consider it a blessing he hasn't had a more serious issue yet with all the projectile vomiting he's been doing lately. Each time he does he acts like he's choking and doesn't know what to do with what's just violently come into his mouth. He throws his head back and purses his lips and probably gets whatever is left in there to go back down. I try not to interfere unless I suspect he really can't breathe because trying to bulb syringe and help him causes him to gag more.

GTUBE

His feeding tube popped Wednesday morning. It was attached to his pump and was a bit odd to see. You could see the hole right into his stomach! Sharalee acted quickly, called the nurse, and the nurse walked her through how to install a new "button". Sharalee did great and saved us a trip to the ER.









HEARING TEST Thursday March 17th

On Thursday morning we all got our green on in celebration of St Patrick's Day. I went to work after a brutal night with Koby struggling to get rest and hold down his food. We put him back on the pump which theoretically allows him to slowly get food throughout the night, allowing us to rest since he won't need to be woken up. Well that wasn't close to what the night brought. He still contorts in pain when the food enters his stomach, so after two hours of slowly getting 30 ml of food every hour he couldn't take it any more. He woke up and cried for a solid 60 minutes. After an hour I disconnected the pump and realized that a slow continuous feed wasn't going to work. He cried until 2:30 am before the exhaustion caught up with him and he fell back asleep. He was able to sleep until almost 4 am before needing to be fed again. It took 90 minutes to settle down after this feeding. By now it was approaching 6am so I went to bed for two hours and Sharalee got everyone else ready for school.









Koby had his hearing test at 10:00 am and I needed to get to work, so my mom went with Sharalee to the doctor for the hearing test. We were supposed to keep him awake so he'd sleep through the test which would give the most accurate results. I didn't really think much of going partly because we expected that the results would show Koby can hear just fine. We've been playing music to soothe him at night and (we thought) he always turns when we speak to him especially when someone he doesn't know is holding him. We were all pretty shocked when the doctor told us Koby has moderate to severe hearing loss. They had to turn up the volume to 70 decibels for him to hear sounds that most of us can easily hear at 20 decibels or less. In other words he will be able to hear loud noises like airplanes and roaring motorcycles on his own. But he won't hear normal conversations on his own. He might be able to tell that there is a noise or vibration when someone is talking but he won't be able to distinguish the sharpness of speech and understand it well enough to communicate so that others can understand him. He also won't be able to hear himself well enough to know if he is talking accurately.

This doesn't mean he is considered deaf. But it does mean that things will be difficult and require a lot more work. We will soon get him hearing aids for both ears, and we have hope that with them he will hear as well as other children without hearing loss.

This was a shock to both of us. Shortly after he was born the doctors told us that he is at risk for hearing and vision problems. His brain went through a lot of trauma, and we just weren't sure of the damage. (There's a lot that we still don't know). I know now that in life you have to prepare for anything. We are doing our best to hope and pray that the hearing aids will work. We aren't prepared or ready to accept that the hearing aids won't help him. He had passed his hearing test in one ear before leaving the hospital. He failed in the other ear but that isn't totally uncommon. The doctor thinks that his hearing may already be getting worse, which is not a good sign. But it also might mean that the original test wasn't an accurate reading. Yesterday's test was definitely accurate.

On the bright side: I thought I had to turn down the volume when watching tv at night with Koby in my arms. Now I don't have to! I can crank up the music. The other night I was able to watch a BYU basketball game from 4-530am while trying to settle him. I had it on mute so he wouldn't be bothered by the sound. Now I don't have to worry about that. He also won't have to be tortured by my awful singing ability. I can't hit a note. Bad hearing will have its benefits:)

We are LEARNING to take each bit of news with a positive outlook. But that isn't easy. We have been attempting to get our insurance to cover the costs of a night nurse. Trading off nights without sleep is wearing us out. So far it looks like we will be denied coverage. We are now trying to appeal this, which is a headache and a lot of paperwork, but is something we have to fight for. We feel that if we can just get some decent sleep we can manage things a lot better, and Koby really needs to keep gaining to help him have the stamina to keep progressing.

The doctor spent little time focusing on the loss of hearing but more on what a great team they had there at the Vanderbilt Bill Wilkerson Center. They will know how and when and what to look for now that we've completed that test. They'll also help us find ways to cover the cost of hearing aids that aren't always covered by private insurance plans. We are so grateful for all of this but we each had to take a quiet moment to cry at the knowledge that Koby just won't hear like the rest of us.

The kids have such great attitudes and we can learn so much from their perspective. We told the kids of his hearing test and Kyle (7) said he wants to be the one to teach Koby how to hear. Then the other four jumped in and said they will teach him how to communicate too. Kamden (4) said he wants to be the one to teach him to go potty in the toilet, and Krew (almost 3) said he is going to teach him to walk. Their attitude is clear: we will just have to do our part to teach him whatever doesn't come naturally to Koby. They won't accept the idea that he "can't" do anything. Yesterday our kids were the teachers and Sharalee and I were the students!

We are so fortunate to have Koby in our family.

Location:Brentwood TN