Saturday, March 3, 2012

Thursday, March 1st, 2012

So although my surgery was not scheduled until April 16th, Dr Morales had a cancellation and was able to get me in today.  Wednesday afternoon Mommy got the call that we needed to report to the hospital at 11:15.  Daddy had a meeting in the morning, so he left as usual and would meet us at the hospital later.  When I woke up, I got to have a few hours of watching TV in my jammies before it was time to go.  Mommy and I left a little early and we stopped by Target so I could pick out a toy for after the surgery.  I decided on a bath toy but Mommy also let me pick out a few items from the $1 bins. 

Once we got close to the hospital, I asked Mommy where we were going.  When she told me the hospital, I asked her why because I wasn't sick.  She told me that we were meeting Daddy.  OK so technically that was true but she left out the part about the surgery. 

We met up at the pre surgical area and Mommy let them know not to pull out the jammies because that was my trigger that I would be staying overnight.  Instead, I cooperated with getting my temp, heart rate, heart and weight and while we waited I had a great time playing with the $1 pack of dinosaur erasers. 

We then moved to the pre op play area where I was given the Versed.  Since I was still in my clothes I had no clue what was about to happen.  A volunteer brought over a hospital buddy for me to decorate.  I drew on two eyes, a nose, a mouth, hair and a trach.  Considering I was a little loopy, I thought I did pretty well!  When Mommy asked if I wanted to draw a button on my doll, I proceeded to draw three "buttons".  Mommy was a little confused until Daddy explained I actually drew buttons while Mommy had been referring to my feeding tube that we usually call button.

About the time I finished up my masterpiece, the anesthesiologist Dr Liu approached.  Cuddled in Daddy's arms I was still feeling okay about life but then we got up to go.  I hopped in the little police car to drive down the hall but everything came to a crashing halt when that is where my parents turned to walk the other way and Dr Liu started pushing me in the opposite direction! 

While I went off to surgery, my parents headed to the cafeteria for a late lunch while they waited for news.  While there they discussed the pros and cons of delaying telling me about the surgery.  The hospital material recommend telling kids my age about a week ahead of time.  Mommy thought with my personality that was just way too soon - that would be 7 days for me to stress about it!  Daddy figured this would probably be the last time they could fool me this way and next time we would not be so lucky.  Since Versed can act as an amnesiac she is hoping that I don't even really remember the point at which I realized I was headed to surgery and just remember all the fun I had until I found out!

After a hour, Mommy got a call from the OR nurse that they were half way through.  The nurse said that I cried for Mommy when I first got back but eventually complied with what they needed me to do before the anesthesia took effect (little stab to the heart for Mommy there) but I was doing fine.  Another hour passed and then Dr Morales brought my parents into a room to discuss the procedure.  When he went in he found that I essentially have no tempomandibular joints at all - it is just complete bone at this point.  He is not sure if it has been that way since I was born or if it has solidified over the years from the pressure of the 2 jaw distractions that have been completed.  He cut the bone on both sides and inserted a sheet of silicone to help prevent the bone from reforming as scar tissue.  Then as it starts to heal the hope is it will form cartilage in between the bone to create a pseudo joint.  Depending on what ends up happening will dictate what procedure to do next.  Meanwhile, I will need to start stretching the area so the muscles don't pull the bone back. 

The hope is that in two weeks I get in to Dr Yamashiro and he makes a mold of my mouth to use to create a Therabite.  Two things have to go right for that to happen - the first is that I cooperate and allow him to make a mold - espescially since I will be one sore cookie when he wants to jump in my mouth in a few weeks.  The second is that they have a Therabite small enough to fit in my small mouth opening.

If either of those things don't work the way we want them to, then we will have to stretch my mouth the old fashioned way - by adding more and more tongue depressors to stretch it.  Dr Morales said I would need to have my mouth stretched 2-3 times a day for at least six months but possibly as long as a year.  Therapy for my mouth just like therapy after knee surgery, etc.

About 20 minutes later, Mommy got called back to recovery to see me.  I was just starting to wake up so Mommy climbed into the bed with me.  Even so, I was getting pretty agitated and the nurse asked me if I was hurting and where my owie was.  I pointed to the big scab on my hip where I had fallen last week.  Mommy thought I was probably in pain so I got dose of Fentanol that knocked me out within seconds.  Mommy and the nurse spent some time chatting and eventually they decided I could move to a room.  In the hall we met up with Daddy and although Mommy tried to point out all the fun pictures on the ceiling I barely opened my eyes.  Once in room 3503, I continued to sleep for quite a while as the new nurse got my room set up for the evening.  Over the next few hours I got started on Pedialite and got some more medication, but most of my pain is supposed to be controlled by the On Q pain catheter aka "pain ball".  A little catheter runs from each of the two incision sites to a sensor taped on my chest.  My body heat helps the sensor regulate a slow drip of the medication into the incision site to keep the area numb.  The catheters then travel from the sensor to a filter and then on to the "ball".  In the ball is enough medication and saline for 72 hours.  The ball starts out hard and about the size of a softball but as the medication is used it starts to suck in upon itself.  The On Q ball comes with a carrying case for when I am on the move.  

A few hours in to my Pedialite feed I vomited up a lot of blood.  I was starting to wake up a little though so Mommy had Child Life bring in some arts and crafts projects.  I started to play a little but it was getting late so Daddy headed home since he had work in the morning.  As Mommy and I were finishing up the first project and we were starting up some formula I vomited up a second round of blood.  Although the pain was really well controlled the rest of the night went like this:

1. Sleep for approximately 90 minutes
2. Wake up and tap Mommy on the shoulder
3. Vomit into the bed pan Mommy barely gets to me in time
4. Clean up the vomit
5. Color my art project for 30 seconds
6. Fall asleep coloring

And then back to the beginning of the cycle. This went on 5 more times during the night until Mommy demanded a new plan around 5 am.  To be continued....

Peyton Nicole Smith

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