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!

8 Days in the Hospital

I didn't mean to leave everyone hanging over Kyle's condition. I have been focusing on making sure Kyle recovered from the last procedure. Anyway, Kyle is doing well. As a matter-of-fact he played poker at a party last night with all adults and ended up tying the game with a elder! :)

Seriously though, his 8 days in the PICU had many setbacks. His pneumothorax condition caused him a lot of pain and he was on major meds for 7 of those 8 days.

THE FIRST NIGHT IN THE HOSPITAL


I didn't leave Kyle's side the moment I first saw him. I wanted Kyle to wake out of his drug-induced stupor so I could talk with him. I was waiting to find out if Kyle was okay mentally. Finally, he awoke. I told him something bad happened while he was in surgery and the doctors had to give him a endotracheal tube. I told him he couldn't speak while the tube was in his trachea. He motioned for paper and a pen. The nurses brought us a clipboard and a pen. He started writing, "This sucks." "I told you this would happen." "Am I going to die?"

His pain was out-of-control. I was hoping the doctors and nurses would keep Kyle asleep for the first night with meds because he was so uncomfortable. For those of you who have been given morphine for pain knows that it doesn't last very long. It works fast but short lived and they were only giving him a shot of morphine once an hour. He didn't rest at all the first night.

THE NEXT DAY

The next day the doctor believed Kyle was breathing on his own well enough so the trachea tube could be removed. They told us he would have to go into the OR to have it removed just in case anything happened. I told them they will remove it with me there. They told me I couldn't go in to OR so they decided to remove it in the PICU. They had to bring a lot of equipment to his room, but who cares. I held Kyle's hand the entire time. Kyle was scared it was going to hurt but luckily it went quickly without any major issues. Kyle immediately started to cough and spit mucus and then he spoke, "this sucks!" Everyone laughed and you could feel the tension in the room lift.

That same day, the orders came in to remove Kyle from the IV. What? Why would they do that? I was so mad because it was way too soon. He's still sick. Major air and fluid was still leaking from his lung through his chest tube.

Two days later they realized he still needed the IV.

V-TACH

(ventricular tachycardia: life threatening arrhythmia where the heart beats too quickly)

On May 10th, Kyle had a v-tach. His heart rate was already extremely high the entire time he was in the hospital but on May 10th his monitor went off on high alert and a team of nurses and one doctor immediately rushed to his bedside. They ended up doing an EKG on him and put him back on the IV.

We are still monitoring his heart rate at home, and it remains to stay high. The cardiologist doesn't know what to make of it yet.

MAKING WAVES  - ENOUGH IS ENOUGH

On May 11th, Kyle doesn't look good. I made everyone in the PICU know I was angry. Kyle was so pale, weak, and somewhat out of touch with everything.

My husband insisted to speak with the anesthetist to find out exactly what happened in the OR on May 8th. The PICU Nurse Manager setup a private meeting for us.

I then insisted Kyle needed meds to control his pain and I told the doctor no more morphine because Kyle doesn't want it. So they gave him Tylenol with Codeine and Toradol (which worked beautifully). I also insisted to give Kyle respiratory care because he was having a hard time breathing and I didn't allow his nurse do the hourly checks on him if he was alseep because he NEEDED the rest. Then we brought in food from a restuarant nearby for Kyle because he wasn't eating the hospital food.

Before the night was over, Kyle was smiling, eating, and his pain was in control!!

GOING HOME

Kyle didn't get to go home until May 15th. From May 11th to May 15th he did well but he had to stay in the PICU just to heal. He was getting x-rays three to four times a day. The neurosurgeons had to make sure his implant was ok and the lung surgeon had to make sure Kyle's lung was healing. The orders came in to stop the suction of the chest tube and do a water seal on May 13th. Then they monitored the x-rays to see how much air was leaking and if Kyle's body would push the air out the chest tube without the suction. The chest tube got removed on May 14th. His x-ray was relatively clear on May 15th. He was clear to go home!!

Headaches

Kyle says he has been having headaches/pain in the back of his head. He says the best way to describe it is like an ice-cream 'brain freeze'. They happen several times a day. Definitely something to ask his doctor about when we see him in a couple weeks.

Photo-1 Week Post-Surgery

This picture was taken 1 Week Post-Surgery

Photo-3 days Post-Surgery

This picture was taken three days after Kyle's second surgery

He Got a Sip of Water

The very next morning after Kyle's second surgery, he got a sip of water. His first sip of water in 10 days. He was happy!!! The swelling in his face and tongue had subdued a bit and he was able to talk. He was in a lot of pain but controlled it with his PCA.

Kyle's Second Surgery

Kyle had to have a second surgery 8 days after the first one. The first surgery was the decompression surgery, then traction for a week to straighten the spine a bit, then the fusion surgery. At first I wasn't nervous about this surgery but Kyle definitely was. For the days leading up to surgery day he kept mentioning how he didn't want to do it. I felt so bad for him.

The morning of the surgery he was scheduled to be in the O.R. at 8am. So a nurse came to get him around 7:30am. The nurse had to move Kyle's entire hospital bed (because he was still hooked up to the traction) to the operating floor. My husband and I went with him. When we got to the operating floor Kyle was moved to a small room to meet the anesthetist. Kyle was crying softly the whole time. The anesthetist was trying to joke around with Kyle but he wasn't in the mood. The anesthetist promised Kyle he would be asleep before anything happened but it didn't work out that way.

Kyle was given medicine to relax him and make he fall asleep but Kyle was too upset to fall asleep. When it was time to take him to the operating room he was yelling at me that he wasn't asleep yet, he didn't want to go. But we had to leave him.

As I walked to the elevator, I had tears in my eyes and I waved slowly to Kyle as he was being moved towards the operating room. I hated that moment.

Then I saw the neurosurgeon team across the hallway from me as if they were going to meet us in the small room. They glanced at me and noticed that Kyle was gone. They immediately came over to my husband and I and asked if we had any questions. Then Dr. Zovickian quickly explained the surgery procedure to us again. I was only half listening because I was sad and worried for Kyle.

The surgery ended up taking longer than the first surgery (prep time was shorter this time). This procedure consist of an implant screwed into the base of his skull and the closest intact vertebrae. Then they took bone from Kyle's hip and added it to the implant to stimulate the growth of new bone. Then he was put into his halo vest and stabilized. Apparently he lost 1/2 pint of blood which was to be expected according to the doctors. (My husband and I donated a pint of blood each a couple weeks before the surgery for Kyle). We got to see Kyle around 7:30pm. The procedure went well but when I saw Kyle for the first time after this surgery, I was stunned.

His face, eyes, and tongue was SO swollen. He looked terrible. His tongue had two large white sores on it and I'm guessing it was from the bite block. He tried to talk to me but I couldn't understand him. I stood in front of him frozen in shock. I was mad, sad and scared all at the same time. He wanted water so bad but there was no way he could drink anything because of the swelling.

I noticed he was laying awkwardly in his bed so I was going to help push him but without thinking I touched the side of his hip and he screamed extremely loud in pain. His entire hip was purple.

Needless to say, the nurses tried to make Kyle comfortable for the night and gave him plenty of pain meds so he could rest.

*****
Fusion with Chari Surgery

One day post surgery....AMAZING CHANGE

One of the most amazing moments was the very next day after Kyle's decompression surgery.

Here's what I wrote I Facebook on Nov. 9th around 9pm: "OMG. Kyle has not been able to use his right arm or hand for over a year because of his issue but just now I asked him to squeeze my hand and he did. I'm happily amazed. So exciting!!"

I still think of it as amazing.

To think that so many of his issues he was experiencing for so long was primarily because his spinal fluid was not flowing correctly. Kyle's voice was another noticeable change. For over a year Kyle basically lost his voice. When he spoke it was barely louder than a whisper. I hate to admit it, but his voice annoyed me the most because I couldn't hear him and I didn't know why. I would yell at him to speak up and poor thing...he tried. But we didn't know at the time why he was losing his voice. So the moment I saw him after his decompression surgery and he spoke to me I was shocked...'cause I heard him! I didn't think his voice would come back but it did!!

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.