Swallow Test

Kyle had a barium swallow test on the 15th because of his long term difficulty with swallowing. I think the speech therapist wanted to see if he has reflux and if he aspirates.

Kyle has explained several times to his doctors that solids get stuck in his throat so he pushes it down with three hard swallows and a sip of water. Many times he ends up vomiting because the food will not go down no matter how hard he tries to swallow. The speech therapist breifly mentioned that his trachea is partially paralyzed. I haven't confirmed this with the head & neck surgeon yet but obviously something is wrong because his swallowing isn't normal.

His speech therapist doesn't want him to swallow water with food. She feels Kyle could possibly aspirate the food and water. She says water slides down too fast so she wants him to only swallow foods that are moist, or swallow with a thicker type liquid such as a smoothie so the food and liquid would go down slower. Kyle didn't agree with anything the speech therapist said; even though it makes sense but he's the one that has to deal with it.

Anyway, the xray did show food getting stuck in his throat and it did take him about 3 hard swallows to get most of the food down without any water to push it down. Luckily, we did not notice any reflux.

More on Kyle's Sleep Apnea

Kyle was scheduled for another titration sleep study on Halloween but we re-scheduled the overnight sleep study for Nov. 2nd. That way he was able to see his baby sister trick-or-treating!

So on November 2nd, Kyle was tested on a BiPap AutoSV Advanced with heated humidifier by Respironics. The doctor called us on November 6th with the results. He said that the standard CPap and BiPap machines didn't work well for Kyle and that this machine was his best option. However, even with this machine his results are still abnormal. Here's the breakdown we received verbally from the doctor from the sleep lab:

Home Diagnostic Sleep Study on Oct. 16th with no breathing equipment:
101 apneas/hour
Average oxygen level low 80s with drops to low 60s

Sleep Study on Oct. 20th with CPap and BiPap:
55 apneas/hour
Average oxygen level 92 with drops to 83

Sleep Study on Nov. 2nd with BiPap AutoSV Advanced:
30-35 apneas/hour
Average oxygen level 94.9

Clearly, the BiPap AutoSV Advanced machine is necessary. On Nov. 6th, the doctor from the Sleep Lab wrote a prescription for the machine and was told a machine would be delivered to our home. We anxiously waited for the delivery of the machine, however, it never came. Instead we unexpectedly received a letter on Nov. 14th (but dated Nov. 7th) from our insurance company that we are not covered for the machine. Frustrated that it took a week for the denial letter to reach us, all the while Kyle suffers. My husband immediately called the sleep lab for a copy of the prescription and I searched for medical supply companies that rent the machine because Kyle has waited long enough for his therapy.

We ended up renting the machine from a reputable company in Nevada and received it Nov. 17th. Their web address is medtoyou.com. Awesome service and fair prices.

-Christy (Kyle's mom)

What? ....... Split Kyle's Face Open?

Kyle had a CT Scan on Nov. 2nd, one month after the removal of his halo. Then Kyle had an appointment to see his Neurosurgeon on Nov. 5th. We don't have all the details yet. I pretty much was stunned when the doctor told me about another possible surgery for Kyle. MRI is scheduled for Dec. 9th and we will have another meeting with the neurosurgeons after that.

The bad news:  Kyle's brain stem is still compressed. Hence, the symptoms he still has:

Central sleep apnea
Hoarse voice
Partial paralysis in trachea
Difficulty swallowing
Shortness of breathe
Weakness in arms
Chronic vomiting

The doctors briefly mentioned the next procedure but to get to the bone that is causing the issue they would have to split Kyle's jaws and tongue in half. As soon as I heard that I went mentally blank!