Kuyler Update

Oh, my goodness...where do I start. Last Friday, Kuyler had his CT scan and over the weekend, our entire family got the stomach flu. Being out sick from work on Monday, I called Kuyler's ENT to get the results of the CT scan. The ENT told me that Kuyler had some thickening, fluid behind his ears, and some development issues so he put Kuyler on antibiotics and steroids.

That night, I was up with Kuyler who I noticed was actually stopping breathing for a few seconds while he slept and then kind of coughing to take a breath. So I watched him sleep and I noticed that his trachea was sucking in like a sink hole when he breathed in. This scared me to death. Needless to say, I did not sleep.

When I went to work that morning, I called the ENT and told him what was going on. He told me that this was definitely a sign of the tracheamalasia and that I needed to get Kuyler to TC Thompson's Children's Hospital to have him checked out, because he did not want Kuyler or me to go through another night like the previous one.

Around noon, I got off work and we headed to Chattanooga. The ER doctor checked him head to toe agreed that he has the condition and called our pediatrician to discuss what was going on with Kuyler. The ER doctor told us to go see our pediatrician first thing the next morning so that she could check him and refer Kuyler to a pulmonologist.

Well, Rodger got the stomach flu and I took Kuyler to the doctor. She checked Kuyler and she admitted Kuyler to Skyridge Hospital to have Kuyler's breathing monitored overnight with an Apnea monitor. This monitor alarms when Kuyler stops breathing for more than 20 seconds or his heart rate goes over 230/under 70 beats per minute. It was really hard to be all alone at the hospital with a sick child. I got through it though.

The next day, our pediatrician would not discharge Kuyler until we had an Apnea machine to take home with us. We also had to take a Infant CPR class as well. My mom had to come to the class as well before we could leave with Kuyler. When we went home and it was not easy to get used to putting on the monitor, but I could sleep better knowing that if he quit breathing, an alarm would wake me. I have not slept soundly since he was born and knowing that he is really having trouble breathing, it is no wonder Kuyler has not been able to sleep through the night.

Kuyler finally passed his hearing test at TC Thompson's Children's Hospital Therapy Center. The audiologist said that Kuyler did still have fluid behind his left ear, but it was the clear kind, so the hearing test was done without any problems. We were worried that the fluid would interfere with the test, but since it was not the thick cloudy kind, the sounds were able to bounce off his eardrum easily. He has perfect hearing!!!!! More than likely he will need more antibiotics or even tubes in his ears, but as long as he can hear, that is fine with me.

The next step is to see the pulmonary specialist Feb 9 at TC Thompson's Children's Hospital. Please keep praying for my little guy. God is Good!!!!

This is the hospital's apnea machine. Ours it kind of different and I will post it as soon as I can get a picture of it.