Creative Chiari

Chiari Carnvial 5
Creative Chiari: Created by Chiarians
Chiari Carnival 5 is about the creative side of us Chiarians

Am I creative? Hmm, my parents think I'm more logical than creative. Perhaps it's because I don't like doing creative writing in school. I actually sit at my desk and pretend to be writing until it is time to turn the assignment in. Then I crumble my paper and toss it in the trash. Or maybe they think I'm more logical than creative because I like reading science and engineering books.

I think my creative side is about experimenting, disassembling and blowing up things, making up games, building virtual environments in Minecraft. How about this: I'm creative in making fun....and making messes.

Powder sugar fight	Shaving cream fight (pre halo)	Water balloon fight

I've been in nerf gun, spaghetti, rice, and whip cream fights too.

I guess that's it. Make everyday great.

Honorary Black Belt

Kyle's Honorary Black Belt from American Shaolin Kenpo Karate

Kyle was honored during American Shaolin Kenpo Karate's annual belt promotion & recognition awards ceremony.  He received an Honorary Black Belt. A first from this Karate academy.

Kyle was five years old when he started training with Grandmaster Castro-Manner and Professor Manner

We don't know if Kyle will ever be able to go back to his training in martial arts but our HOPE is he will (minus sparring).

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!!

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

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.

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.