Saturday, March 22, 2008

Cami's Palate Surgery

Before leaving town, I took a photo of Cami's mouth and the space where her palate should be. Soon I hope to be able to post another picture showing her new palate. This is how her cleft palate looked before surgery:

We arrived in Chapel Hill for the pre-op appointment on Tuesday morning. We met Dr. Van Aust and also spoke with Dr. Drake who would be inserting ear tubes during the surgery. Everything went smoothly and after leaving the hospital we spent the afternoon having lunch on Franklin Street and playing at The Children's Museum which had a traveling castle exhibition. Here is Cami preparing a big pot of stew while wearing her red velvet cape:

The next morning we arrived at the hospital around 10:30 for check in. Because her surgery was not scheduled until the afternoon, Cami was allowed to have apple juice until 9:15am. This worked out great for us. We slept late in the hotel and she had her normal routine of a cup of juice upon waking. Soon after we left for the hospital and once there she was occupied and didn't complain of hunger.

We were sent to a large waiting room, full of many families whose children were having out patient surgery. We were the only people I saw with luggage. Soon we were called back to a room where we waited for the operating room to be ready for Cami.

Someone brought Cami a pack of hospital pajamas. She loved her tiger pajamas even though the pants alone were taller than she was. She also loved the bright yellow hospital socks. She insisted on wearing all of it! And I have to agree. It really is all about the fashion..... if you are going to get an operation, you should at least look the part. Aren't these pajamas great?!!

The anesthesiologist gave us the choice of having Cami drink something to sedate her before the surgery so she wouldn't mind them taking her away or letting one of us carrying her to the operating room ourselves. I definitely jumped at that opportunity. So I got my own set of stunning pajamas complete with hat and mask to make me germ free. (sorry, no picture was taken of me!). Then we were escorted back to the OR. I was shown to a stool right beside the operating bed where I was allowed to sit down, holding Cami. Then I was handed a plastic gas mask and I was allowed to hold it gently over her mouth and nose. She batted her eyes a couple times and then fell into a light sleep. Then I was instructed to lay her on the table. She was completely sedated though I'm sure they put her into a deeper sleep after I left. She never whimpered. It was a most peaceful way to start surgery on a child.

The surgery lasted about 5 hours total. We had lunch in the hospital cafeteria and sat with Mark's parents who had driven up to keep us company. It was nice to have them there to talk with and keep our minds off the time. Around 5pm, I was told that Dr. Van Aust was finishing up and the surgery had gone well. Soon after that I was invited back to the recovery room to help ease Cami back into this world.

Let me just say that coming out of the anesthesia was not nearly as peaceful as going into it. I could hear her screams as soon as I entered the door to the recovery room. Not only was she screaming, she was thrashing and kicking and doing everything she could to try and get away from the misery she was in.

Luckily, Cami was handed to me, and she seemed to calm down just a little bit. But it was a brutal time for her. She was obviously in alot of pain. I was pleased with the way it was handled. She was treated with respect and dignity. Each time she cried out, her nurse put something in her IV (probably morphine). It worked quickly, but the effect didn't last long. In between they tried giving her pain meds by mouth because they last longer. And they tried to get her to swallow some juice. She cooperated enough to get qualified to head to a room, but she was not a happy camper.

There aren't words to describe the hopeless feeling of watching a child in pain. I don't remember alot about that night in the hospital. The minutes were marked by the degree of pain I thought she was in. The hours were marked by the minutes she managed to sleep. At one point the surgeon on call came by to talk to us and I had a hard time focusing on what he was saying. But apparently he understood she was having some "pain issues" and he was willing to try something else to help her. I think he included a stronger narcotic in her pain cocktail and while it was in effect, she began to sleep. Here is a the first picture I took of her, just a few moments after coming to our room.....and one of the few times she slept like this for the next 24 hours. And also the last time the bedding was this white! Palate surgery is alot bloodier than I expected! We made a good mess of the place by morning.

I have never been so happy to see the dawn. In the darkness we had all fought the pain monster tangled up in IVs, heart monitors, and oxygen numbers. We had learned what no-no arm restraints were really like and we had regained most of Cami's trust back as she slowly realized we did not do this terrible thing to hurt her.

She turned the corner around ten o'clock on Thursday morning. She sat on my lap and ate a crushed up popsicle. She refused to go near the crib. She took a ride around the children's floor in the wagon. Looking at the pictures I can't believe I thought she was doing better. She still looks rough. But knowing these pictures were taken when she had greatly improved will give you some measure of how far down we had gone in the night.

And so we were allowed to go home. We've been home 48 hours now. Cami is eating soup and drinkable yogurts. She loves her bath (cause no-nos can come off) and she can shimmy out of the no-nos at lightening speed. She is taking her pain meds and antibiotic easily and drinking water throughout the day. She is sleeping well, playing puzzles, drawing with markers, and learning to hunt for Easter Eggs. I can see her improving by the hour.

Cleft palate surgery is easiest on the youngest babies. It is harder on a 2 year old than on a 10 month old, and much much harder on an older child. It is an intense surgery but the hard part is over quickly. And children are so beautifully resilient. Once I saw the sparkle in her eyes, I knew my Cami girl would be okay.

It is a huge turning point in her life. This was a surgery that had to be done, both to support her ability to speak and to support the bone structure of her face. Having it behind us is a great relief. We will move forward with thankfulness. Having a doctor create something as precise as a palate in the roof of a tiny mouth is nothing short of a miracle.
I don't want to ever take that lightly.
I don't want to ever forget.

Here is a final shot of Cami resting peacefully at home with her no-nos and painted fingernails, thanks to big sister, Lauren:


amy said...

Im so glad you shared this. As a cleft lip/palate nurse, I love to hear the parents side of things, especially since I may be experiencing the same thing

amy said...

Im so glad you shared this. As a cleft lip/palate nurse, I love to hear the parents side of things, especially since I may be experiencing the same thing

amy said...

Im so glad you shared this. As a cleft lip/palate nurse, I love to hear the parents side of things, especially since I may be experiencing the same thing

The Straight's said...

Thanks for the detailed post. My little one is going for the same surgery in just 2 weeks. Best wishes for a speedy recovery.

Lizard said...

Thank you for such an encouraging post about the surgery. We are headed to palate surgery next monday and I am growing nervous, but you make so many great points. Thank you!

Special K said...

Thank you for sharing and in so much detail.We'll be facing this surgery in a few months and I'm sad for the pain I know my son will feel. But as you say, it's some that much be done.

Wishing Cami quick healing!