Hmmm, The Magic of Steroids

Kyle took his prescription of steroids from Dec. 11th to Jan. 4th for treating his swollen spinal cord.

Major changes occurred during this past month.

First of all, Kyle slept all night on Dec. 17th WITHOUT his BiPap autoSV machine. I was nervous to let him but he fell asleep fast and I checked on him several times throughout the night and he did fine. However, I still tell him every night to use his machine but it's been a hit and miss since 12/17. But it's weird, right? To think he was pausing in his sleep over 100 times an hour and it was because his spinal cord was swollen. All the sleep tests Kyle had to go through and waiting for a sleep machine could have been avoided...possibly. Grrr.

Secondly, he's been full of energy. I know steroids does that but he's been off the steroids for about 20 days now and he is still full of energy.

His voice came back! My favorite change!! His voice is slightly scratchy but definitely louder.

He has NOT vomited since Dec. 11th. Kyle's favorite change. ;)

He CAN sneeze. When he sneezed normal for the first time last month it surprised me because it's been a long time since he sneezed normal.

Swallowing food is easier and he does not have to drink water with every bite of food to push it down.

No headaches. A good thing!!

I'm truly thankful that Kyle has done well this past month, and I just want it to continue!!

His next MRI is this weekend and we meet the neurosurgeons on Monday, 1/28, to find out more about the next procedure. I'm hoping the next procedure can wait a while so Kyle can be Kyle!

Spinal Cord Swollen....AGAIN!!

Kyle still vomits every day, he still can't sneeze normal (I know this sounds weird. I'll explain in a bit), he still has headaches daily, has high blood pressure, his voice is still muffled/hoarse, and he still does not breathe in his sleep. Frustrating!!

By-the-way, no word from the speech therapist since the barium swallow test. I didn't think we would anyway. The test was a waste of time because I know there is nothing she can do.

So, remember on Nov. 5th I posted that one of Kyle's neurosurgeons mentioned that Kyle's brainstem is compressed. He based this on Kyle's Nov. 2nd CT scan. He told us the odontoid (bone) is the cause for the severe anterior compression of the brainstem. Based on Kyle's images it appears the compression is on or near the medulla oblongata area of the brainstem. So I researched what the medulla is responsible for and I read it contains the cardiac, respiratory, vomiting, and vasomotor centers and deals with autonomic, involuntary functions, such as breathing, heart rate and blood pressure. Yikes, right? So, we had to wait from Nov. 5th to Dec. 9th for another MRI to be done.

So, Kyle had a MRI on December 9th. (Kyle had his birthday a week before this appt....he's now 13).

We met the neurosurgeons and team on Dec. 11th. The neurosurgeons immediately started asking us if Kyle had fallen recently. Which he hasn't. Kyle hasn't done much for months because he feels so yucky. Then they tell us they are not sure why BUT Kyle's spinal cord is swollen.....AGAIN!! At this point I wanted to scream 'I knew it!' but I was thankful knowing Kyle would be prescribed steroids again to fix this problem. It hurts me to think about how long Kyle has been suffering from this swollen spinal cord. I have no doubt that it has been swollen since before the halo was removed. Now, this doesn't mean he is out of the woods for the face-splitting procedure. The doctors mentioned the procedure again but says they will address the issue next month after his spinal cord heals. For now, they put Kyle back into a full brace and he is on steroids for about a month.
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SNEEZING ISSUE: For some reason when Kyle has to sneeze he basically sneezes inwards and then it causes him to vomit. He cannot launch a sneeze outwards like a normal person would.

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)