I like Minecraft and Call of Duty. I achieved green belt in Karate. I received an Honorary Black Belt. I play the drums. I'm the oldest kid in my family of six. And oh yeah, I have Chiari Malformation; my brain is not fitting where it should.
I'm Kyle. I was born with Klippel Feil syndrome and diagnosed with Chiari Malformation in Sept. 2011. I had my first decompression surgery in Nov. 2011. This blog is about me living with both, and my surgeries.
Want to email me?
Click on the 'About' link above and find the 'Email Me' button at the bottom of the page.
I was so bored the first four or five days after my first surgery but I learned a lot! I learned about everything my nurses had to do to take care of me. A couple of my respiratory therapists (who vibrated my chest with a machine to avoid fluid build up in my lungs and also gave me breathing treatments) would spend time talking with me. One of my respiratory therapists brought me a Fentons milkshake a few days after my second surgery. It was soooo good.
When we saw Kyle for the first time after surgery he looked better than I expected, however, he looked miserable. He had his halo screwed into his head and the traction part was attached to a pully system with weights hanging from it. It had 2 lbs. of weight attached. He was lying on his back with his pillow in an ackward position. He had many leads and IVs attached to him. He could barely speak but when he did he mentioned how thirsty he was and how he was in a lot of pain.
He was given pain meds once evey hour but he wanted it much sooner than that. He was not allowed any water or ice chips because of the fear of aspirating. We were only allowed to swab his mouth out with a wet q-tip-like sponge.
Because Kyle was in so much pain he was asleep shortly after he received his meds but woke as soon as the pain got intense which was every 45 minutes.
When we got to the lobby after leaving Kyle we hanged tight for the first hour waiting for the first phone call.
The male nurse called us right at 9am and said they just got Kyle under anesthesia. He said he did well and Kyle answered all questions well. The nurse said he would call us again in 2 hours. 2 hours later the nurse called and said they were still positioning Kyle for the surgery. Then 2 hours after that he said they started the procedure.
Each phone call throughout the day was slightly vague but comforting and something to look forward to.
By 5pm the nurse called and told us the procedure was done and the doctors were suturing him up. He said Kyle had minimal blood loss so he didn't need a blood transfusion. He said he would call again in 2 hours.
2 hours later he said they have moved Kyle to ICU and all the doctors and nurses are finally happy with Kyle's position in his hospital bed with the halo/traction. They put 2 lbs. of weight to start with on the traction. He said the doctors were on their way down to see us.
Little after 7pm the neurosurgeon team came to the lobby to see us. Dr. Zovickian said everything went well. They only had to remove 1 1/2 vertebrae and a portion of his skull. He said the spinal fluid immediately started to flow correctly.
Kyle went into surgery two days ago. We got to the hospital by 6am. He was registered by 6:20a and then we went to another room to prep. Kyle had to put on his hospital gown, do a breathing treatment, and have his vitals checked. Then a nurse put numbing lotion on the top of both his hands to prep for IVs.
Then we met with the anesthetist. She asked many questions and told us how she was going to put him under anesthesia. She said due to his airway restrictions and swallowing issue she was going to use a fiber optics breathing tube down his nose to his lungs. If that didn't work she would have to do a trachea. She said due to his positioning (he had to be face down for surgery) that many issues could happen to his breathing so they had to take many measures to prevent any. (And they did. We later found out it took almost 4 hours before they even started the surgery to make sure he was positioned well. Apparently they put the halo on first with him lying on his back and they did all their positioning tests and that took almost 2 hours. Then they put him on his stomach and did it all over again taking 2 more hours).
Next the nurse gave Kyle 'happy juice' which was medicine he had to take by mouth that was to relax him. They told us it gives an amnesia effect so he won't remember much after he takes it. It knocked him out immediately. Kyle was sitting in a chair but started to slouch so I held him up.
After we were done with the anesthetist the surgery team came in to meet us which were:
His 2 neurosurgeons from Oakland
1 visiting neurosurgeon from London
1 visiting neurosurgeon from Korea
3 Practitioner Assistants (P.A.)
1 Social Worker
One nurse who monitors his nerves with needles/sensors (I don't remember his title)
Then a male nurse came in with a wheelchair and said it was time. He said he would call us on our cell phone in one hour then every 2 hours after that. We had to pick Kyle up and position him into the wheelchair. Kyle was still asleep.
We walked to the O.R. area with Kyle and the nurse and stopped at some service elevators. The nurse told us to take the elevators to the lobby, we had to leave him now. I started to cry and I hugged Kyle very tight and kissed his head. Then he woke. His eyes were wide open looking around. I saw tears come down his cheeks, and I had to leave.
Just found out we have to be in Oakland tomorrow at 6am. Kyle cannot eat after midnight tonight but can have clear liquids until 4am. We were told his first surgery will take about 6-7 hours. I'm guessing surgery will probably start around 8am and we won't see Kyle until around 4 or 5pm.
Kyle is definitely nervous about his surgeries. He keeps telling me he doesn't want to go through with it. He knows he only has one more day before his first surgery. As much as I don't want him to have surgery I know we have no option.
Kyle was weak today. We had to go to two parties today and by the end of the day he was completely dragging his right leg and couldn't move his right arm at all. He can't do little things we take for granted like opening a car door or buttoning a shirt anymore. I still pray that he will get his strength and feeling back after he recovers from his surgeries.
Kyle had his pre-op today. I'm not 100% sure how Kyle is feeling about everything but I'm feeling nervous, scared and at the same time wanting to get it over with. We met with the surgeon's assistant (P.A.) today to go over the procedures again. She told us that some of the risks of the surgery Kyle is already experiencing, which are partial paralyses in his right arm & leg as well as his swallowing issue and his eyes shaking. The major risk, of course, is full paralyses but he's heading that way if he doesn't get this done.
Kyle's first surgery on Nov. 8th is still the decompression surgery. They will be removing a portion of his skull and 4 to 6 vertebraes (the back portion of the vertebraes). Then add a graft which is the lining of a cow's heart. He will wake in a halo and traction. The P.A. said he will be awake for most of the week he is in traction but possibly sleepy due to the pain meds. She said he will be able to eat food, watch TV, and use a laptop or Ipad. He will not be able to get out of bed of course or move his head. He will stay in ICU for the week and his dad and I will take turns to stay with him 24/7. His room will have 1 sleeper bed for us.
The reason for Kyle to be in traction for a week before the second surgery is to straighten and lengthen his vertebraes. The neurosurgeons and the spine surgeons will reopen his incision (possibly it will be a little longer) on Nov. 16th to add the rods for fusion. Two rods will be screwed into the base of his skull and into the last intact vertebrae. Then they will add bone from his hip over the rods.
I feel hopeful that this not only fixes the chiari malformation but it also helps fix some of the bone deformities due to the Klippel Feil. I'm trying to stay positive and get Kyle to feel excited about it too because the sooner it gets fixed, the sooner he can start feeling better.