Recovery Notes from First Surgery

Kyle's first week in traction had major ups and downs. The first four days he was in so much pain.

On the third day post surgery: Kyle had a feeding tube put through his nose to his stomach to administer him Tylenol and Valium. No food.

One of Kyle's P.A. also adjusted Kyle's halo and tightened the screws. This was extremely painful for Kyle and hard to watch. My husband was so angry that they were hurting Kyle but the P.A. said there was no easy way to do it.

So, that night the doctors allowed him to have a PCA (patient-controlled analgesia) which means he was in control of his pain medicine. He would push a button and a certain amount of pain medicine (morphine) went into his vein through the IV (intravenous) tubing. Only he was allowed to push the button.

On the fourth night at the hospital one of the nurses and the E.R. doctor moved Kyle's head to try to see the stitches on the back of his head. This scared me a lot and it hurt Kyle. The doctor moved Kyle so fast by rolling him to the right side of the bed, but didn't stabilize Kyle's head or the traction. (Kyle now had 4 lbs. of weight on the traction/halo). Then the doctor rolled him to the left side. They didn't position his head correctly after the move and it ended up hurting him a lot which took the next 3 hours to try to correctly reposition him and control his pain again.

So now, Kyle was a little more comfortable but very bored.

By the fifth day, Kyle was moved to another room in ICU. His new room was larger, had an awesome view of the S.F. Bay Bridge and had a T.V. in a position where Kyle could see it.

Unfortunately, Kyle was not allowed any water or food in fear of aspiration pneumonia so he was extremely thirsty all week.

Bored After First Surgery

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.

First Time Seeing Kyle after Surgery

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.

Surgery Day - Waiting

--We didn't get to see Kyle until 7:30pm.--

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.

Surgery Day - 2 hours before Surgery

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.

Surgery Tomorrow

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.

One More Day

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.

Let's hope.

Pre Op

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.

Pre-Op

Pre-Op is Tuesday. :(

Getting Weaker

Kyle fell yesterday and couldn't get back up on his own. I can tell it upset him badly. Later yesterday he couldn't even pick up his android tablet. Today, I took him to get his pictures taken at a portrait studio. He was weak and tired but did the session anyway. As I was reviewing the pics I looked over at him sitting in a wheel chair and he literally looked like he was going to pass out. He said his stomach hurt. Instant fear came over me as if I'm going to lose him. He has two more weeks before his surgery. I pray we can wait that long.

Fitted for Halo

I got fitted for my halo today. Actually the technician just took measurements of my head and chest. I ask if it comes in different colors. He said no. Too bad beings I have to wear it for 6 months. I wanted it to be red. I also found out I will not be able to take showers. :(

Tablet

Got my first tablet today :D. Thank you momma and papa. This will come in handy.

Rehab

I was searching the Web to find answers to 'will Kyle be able to get his strength back'. This website is not related to Chiari but is well written explaining rehab/recovery. Hope.

Chiari Info.

Here's more info. on Chiari from the Mayfield Clinic Website. This page also shows what happens during the decompression surgery.

Good Days / Bad Days

I'm Kyle's mom. I've noticed Kyle has good days and bad days, but regardless, he is getting weaker by the day. Kyle is experiencing neuromuscular deficits because the flow of his spinal fluid is getting blocked. Some of his issues are weakness of arms, hands, legs and feet. He is having more difficulty with balance and coordination. He also has major swallowing difficulties. Watching him go through these issues is heart-breaking. I'm trying to prevent him from exhausting himself because I don't know if he will decline more or not if he does too much. I also don't know if he will get strong again after his surgery. I pray he does.

Chiari is congenital defect?

My mom and I was reading a little more on Chiari and many of the websites says Chiari is a congenital defect (present at birth). So why wasn't this noticed when I had a MRI when I was a baby? Grrr.... 

Klippel Feil

Klippel Feil syndrome is a rare birth defect that affects the spine. The doctors told my parents Klippel Feil is not genetic. There can be several symptoms associated with Klippel Feil but the most noticeable one is a short neck. I have a short neck with fusion in some of my neck vertebraes, and I was born with a single kidney. My parents told me they had a MRI done on me when I was 9 or 10 months old but they were told my brain was fine. I'm curious why they didn't notice my Chiari then.

Klippel Feil Websites: Click here or here




*note: my mom helped me with this post

Halo Traction

I found this site that describes the halo traction. I don't want to think about it. The thing gets screwed into my head and weights are added to it. I'm told I will be kept somewhat sleepy for the week that I am in this thing.

I don't know if everyone who goes through decompression surgery has to have this but I think I do because I have Klippel Feil.

Surgery Scheduled

So, I've been told my first surgery is set for Nov. 8th. My second surgery is set for Nov. 16th. My first surgery is the decompression surgery. Basically the neurosurgeons are going to remove a piece of my skull and some vertebrae pieces then add a graft (cow's heart lining) to open up the space that is blocking my spinal fluid to flow correctly. Then I'm told I will be in ICU for a week stuck in a halo traction thing that they add weights to in order to pull and straighten my spine before they do the next surgery. The second surgery is the fixation surgery where they will add metal rods or something like that to fuse my neck vertebraes.

The whole time I was listening to the doctor explain this to my parents and me I was thinking,  "what the....?" Grrr.


Note: my mom helped me with this post

Symptoms of Chiari

Here's a list of MY Chiari symptoms:

• Headaches
• Neck pain
• Loss of balance
• Loss of feeling in right arm and hand
• Difficulty swallowing
• Vision problems
• Fatigue
• Vomiting
• Choke easily on food and water
• Dizziness
• Weak
• Hoarse voice (Vocal cord paralysis)

note: my mom helped me with this post

Diagram of Chiari Malformation

What is wrong?

At first I didn't know what was wrong with me and I didn't know how to explain to my parents what or how I was feeling. Which was: I was tired a lot; I wanted to lay down all the time; I had headaches; I had dizzy spells. Then I started not using my right arm and hand. I got weaker in Karate. Then I started falling/dropping for no reason. And because I couldn't explain it and my parents didn't know what was wrong they did a lot of guessing.

They would ask me: "Why are you being lazy?" "You are not eating right, you need more vitamins and fish oil." "You need more sleep." "Try harder." "Use your right arm."

Of course, nothing changed.

I also have Klippel Feil, I was born with a single kidney. So my parents insisted something was wrong with my kidney. But nothing showed up too abnormal. So my parents started worrying that maybe my symptoms meant I had MS or Parkinson disease. They kept taking me to my doctor to find out what is going on.

Finally, nearly a year after my parents started getting concerned with thinking something was seriously wrong with me, my doctor ordered a MRI scan. The scan took 2 long, uncomfortable hours. The next day, my doctor called my parents and told them that a neurologist will be contacting them and that I should not be doing any physical activities.

We met a neurosurgeon about three weeks ago. And that is when they told my parents I have Chiari malformation.

Everything is going to change.

Background

Hello. I'm Kyle. I started experiencing changes about 2 years ago. Not knowing what was wrong with me until recently. A MRI scan showed I have Chiari Malformation. This blog serves as a journal of my experiences with Chiari. I plan on updating this blog before and after my surgeries. My parents will help me blog when I cannot.