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.


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 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.


(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.


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!!


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!!

Simple Procedure Nightmare

Kyle was scheduled for a simple procedure on Tuesday to take out his old pins from his halo and put new pins in. His doctors wanted to do it in the OR under anesthesia. So the day started off with us getting at the hospital early and waiting in the pre-op room for 2 hours. Kyle was very nervous about the surgery and I kept telling him it will be an in-and-out procedure. He said he did not want a tube down his throat, he did not want a catheter, and he did not want to stay the night at the hospital. I assured him that would not happen. But.....

I knew something was wrong based on how long it was taking. When the neurosurgeons finally came to tell me what happened I was beyond upset.

Four hours after they took him to the operating room we find out major issues occurred while Kyle was in surgery. Kyle had a bad reaction to the anesthesia and wasn't breathing. The anesthetist had to take life threatening measures. Major domino effect-one thing lead to another trying to save Kyle. The anesthetist told us (three days later) he was afraid Kyle was going to die in the operating room. So while the anesthetist tried to pump oxygen into Kyle his lung popped a hole which made it collapse and leak air.

My husband and I immediately went to the PICU to see him. It was chaotic. He was tied to the bed and shaking and kicking like crazy. He had a trachea tube so he couldn't talk or scream but I could tell he was trying to. I yelled at one of the P.A.'s. I said something like 'what the hell, I'm so angry'. The anesthetist who popped Kyle's lung came over to me and tried to explain what happened but I wasn't listening. I immediately went to Kyle's side and kept calling his name. Kyle didn't recognize me and I don't think he knew what was going on or where he was. Several nurses and doctors were at his side doing their thing, hooking him up on machine after machine. I started crying and I yelled, "Is his brain ok?" Nobody answered me, they just gave me a terrible stare.


Kyle was suppose to just be given anesthesia through a mask and the whole procedure to change his pins was to take 20 minutes. But Kyle's oxygen level was dropping so the anesthetist decided to open his airway. The anesthetist tried several methods that wasn't working and at some point Kyle became critical where he wasn't breathing. The anesthetist and his team took drastic measures to get Kyle to breath and while they were manually pumping oxygen into him they believe over pressure caused a tear in his right lung. So his right lung collapses and the air starts to leak into his body. Another surgeon then had to put a chest tube in Kyle to vent the trapped air. At this point, they weren't sure if Kyle suffered any neurological damage.

Going to England...well, my images are

I saw my doctor on Friday. He told me that he is going to England in a week to do a talk about Chiari and my images are going with him. He said my condition is so rare and severe because I have Klippel-Feil and Chiari that my surgery was complicated and I'm a good study for his talk. He said he wish I could fully understand the complexity and severity of my condition. Dr. Pang looked excited about his presentation and he offered to show it to my parents and me. After my exam and after Dr. Pang told me I have to have my pin sites moved, he took us into a conference room and showed us his PowerPoint presentation. He said the presentation is very long but he went over the highlights with us and when he got to my images he showed us everything and explained what he will be talking about in England.  My images are going to England. :)

Painful Pin Sites - Upcoming Procedure

Kyle has been experiencing a lot of pain for the past month. He has been having headaches almost every day plus major pain at his four pin sites. His halo has been making clicking noises too but I couldn't figure out where the clicking was coming from. Plus Kyle has been having me help him lie down in bed at night and help him get up in the morning. He says he feels his halo shift every time he lies down or gets up and it hurts. My thought is Kyle is still growing. He has been in his halo for six months so the vest is tight and the pins are loose. For the past three weeks I have been emailing his physician assistant about these issues. Finally, we went to Oakland to see his doctor on Friday, (5/4). Unfortunately, we didn't get good news.

First of all, Kyle had a CT scan on Monday, (5/1) to check his implant/fusion. So, his doctor used this scan to give us the bad news/good news.

Good news - The fusion is improving

Bad news - The fusion isn't complete. Kyle will not get his halo off for a few more months.

Good news - His pin sites are clean, his halo vest is clean

Bad news - The halo pins are all loose. Kyle is in pain because the pins are rocking and scraping his skull. They cannot be tightened because the sites (the skull bone) are weak. If his doctor tightens the pins they will poke thru his skull.

Bad news - The pin sites must be changed immediately. To change his pin sites he has to be under anesthesia. So, Kyle is scheduled for surgery on Tuesday, (5/8).

Pray all goes well.
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