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.
__

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.

Swollen Spinal Cord

Kyle has been sick since July 13th. He's been vomiting every day, he can't and won't eat. All he wants to do is stay in bed. I've noticed he is laboring more than normal to swallow, breathe and speak. I've been trying to figure out what happened; why does it seem his Chiari symptoms are returning all of a sudden. Kyle had a CT scan on the 13th. I was there. Nothing seemed to have harmed him. We saw his CT scan results on the 16th with the P.A. and the results looked good. Of course, the CT scan is mostly to see how his fusion is looking. It cannot show how his spinal fluid is flowing.

The P.A. on the 16th said Kyle's fusion is complete from top to bottom but the bone itself is not thick enough so he will be wearing his halo for at least 3 more months. Devastating to Kyle because he was hoping to be able to go back to school. Anyway, I explained to the P.A. that Kyle has been sick since the 13th but she didn't feel it was anything to do with his Chiari.

Four days later, I take him to see his regular pediatrician because he was getting worse. His pediatrician wasn't in on the 20th so we saw a pediatrician that was available. That pediatrician prescribed Kyle a nausea medicine that cancer patients take.

Four days later, Kyle still isn't better. His voice is nearly muffled. He won't stand or walk. He won't eat. I email a desperate message to the neurosurgeon. First thing the next morning another P.A. calls me and tells me to take Kyle to get another CT scan and then come see her. When we met the P.A. she said no change in the scan from the one on the 13th. So they don't know why he is feeling the way he is. I mention he needs a MRI. We need to know if his spinal fluid is flowing correctly. She calls the neurosurgeons, whom were in surgery at that moment, they tell her do the MRI immediately.

2 days later, we are rushed in for a MRI. Two MRI technicians and three radiologist were there during the session. And Kyle's neurosurgeon was reviewing the images live from his office. Kyle was in the MRI for about 1 1/2 hours. I stayed in the room with my hand on his leg so he knew I was there.

After the MRI we were told to immediately go to his neurosurgeons office. His doctor needed to speak with us.

We get to Kyle's doctor office. It is now after hours. No one is around except us and the neurosurgeon and his team. The neurosurgeon examined Kyle and appeared very upset. He asked us if Kyle has had any accidents or falls. He showed us the MRI images and explained Kyle's spinal cord shows signs of trauma. His spinal cord is swollen and the spinal fluid is pooling at one location. My heart dropped. Kyle, with his muffled voice, says, "Am I going to have more surgery?" "Not for this, Kyle, not yet," says his Dr.

Kyle's doctor prescribes a steroid for him to take for the next 2 weeks. The hope is the meds will reduce the swelling. The hope is Kyle's voice will return. The hope is he will start to feel better.