Monday, January 31st, 2011

A note from Mommy:

Wow what a day!  First, let me just first say "thanks" for all the well wishes we received via phone, email and in person.  Peyton is obviously a hard core girl and seems to take everything in stride, but we appreciate everyone praying and thinking of her and us during this time. 

We expected to have to wake Peyton this morning to leave for the hospital but as soon as the Pedialyte was turned off at 4:30 am, her button started sucking in and woke her up.  When I came out at 5 am to let Michelle go, she was awake and ready to watch some Caillou.  At 5:30 am we got in in the car and headed to the hospital.

In the waiting area we waited along with many other families to start the surgery process.  Peyton watched a Singing Time video on her DVD player and was in a great mood.  We got called back and for one of the first times ever, she happily got her height and weight checked (26 lbs now!) and we were escorted into a room.  They they took her blood pressure (no fighting this either) and temperature and after a few minutes we went to a waiting area.  There, the OR nurse introduced herself and Peyton continued to watch her video.  Moments later, Dr Morales and his resident, Emily came by.  We discussed the surgery briefly and then Dr Morales got out his handy dandy camera and Emily stood behind Peyton and I with a blue cloth to get some pre op photos.  Peyton got very upset until Daddy handed over her pink bear to pose in the picture with her!

After they left, the OR nurse came by with the Versed but only a few minutes passed and the anesthesiologist arrived.  Let me first say that everyone was wonderful and very professional but it is very clear who has the "warm fuzzy" personality and who doesn't.  The anesthesiologist very much didn't.  He went over the paperwork and then asked us to follow him to another waiting area.  Now I was very aware that the Versed had not yet kicked in but since we were going to move to another waiting area I figured we'd have some time.  Half way down the hall Mr. Cold Russian Guy said this is where we did the hand off and I handed Peyton to him.  He held her out from him in the classic Three Men and a Baby way and we watched her cry as they took her away.

Travis and I checked in at the surgery waiting area and then headed down for a quick bite.  Since Peyton was scheduled for a three hour surgery we knew we would have some time.  After breakfast, we went back to the waiting area and I read on my Kindle and Travis listened to his Ipod to pass the time.  Mid way through, the OR nurse called out and let me know that Peyton was upset when she first came back but settled down quickly after getting the anesthesia and the surgery was going well.  While I was on the phone, Travis talked to a young couple next to us.  Travis and I had been commenting that we were probably going to win the longest surgery award but then we learned their 4 month old son was in for open heart surgery for 5 1/2 hours.  His first open heart surgery when he was a few weeks old lasted for 8 hours and he was in the hospital for 28 days.  They were expecting a week stay this time around.  We chatted with them for a while and then Glenda came to wait with us.

It didn't seem too much longer (just about 3 hours) when we got another call from the OR nurse that they were just finishing up and Dr Morales would be out shortly.  They brought us into a private room for the consultation and minutes later Dr Morales and a visiting physician came to give us the news.

1.  The surgery went fine.  The jaw bone had healed well from the last surgery but is kind of ski wampus and as a result the distractors are at different angles on each side.  We have four pins to turn twice a day for several weeks.  We need to come to the clinic every week during the pin turning and then every month until they are removed.  Right now he is anticipating two weeks of pin turning and then leaving the hardware on for another two months.

2.  The ankylosed left TMJ doesn't appear to be an issue with the bone itself.  Instead, the muscle is very tight.  In order to stretch that it would require some excercises and that will not be possible until the jaw bone is well healed.  So it will probably be a good six months before we go to stage 2 of her treatment plan to work on the joint issue.

3.  Dr Morales finally got a good look at her palate.  He said that the soft palate is almost non existant and her uvula is just a tiny thread.  Stage 3 will be fixing the palate but we did not discuss methods or time frame.

To our surprise, Dr Morales said we could go home as early as Tuesday.  Most kids stay longer to monitor the airway and eating - since Peyton has both a trach and a g tube as long as we are comfortable and she is doing well we can go home. 

After he left, it was only a few more minutes before they called back one parent to her bedside in the PACU.  Despite seeing other children with external distractors I was still a little taken aback when I saw her.  As usual, she was not happy and was fighting them pretty good.  She was aware I was there and made it clear to me that she wanted the pulse ox moved from her finger to her toe.  She also then motioned that she wanted the IV removed from her foot but that wasn't something I could help with!  For the next 20 minutes or so, she would get really upset, her heart rate would rise quickly into the 150's and her saturations would start to fall.  Then she would just go limp in my arms and her sats would improve and her heart rate would drop like a rock to the 60's.  I quickly discovered her trach tie was completely loose and the trach kept sliding out.  Before it fell out completely, I adjusted the velcro on the ties and that seemed to help stabilize her saturations.  After several cycles of fighting and falling asleep, she had a bed and it was time to go to the room.  I hopped in bed with her and we met Glenda, Travis and Shawn in the hallway.  I could tell from their expressions they were also a little shocked at her appearance.

As we rode down the halls, she woke up and started pointing at all the images painted on the ceilings.  We ended up in the N unit which is painted as if you are underwater and she was excited to see all the fish on the walls.  Once we got into the room, she quickly fell back asleep for close to an hour.

When she awoke, she sat straight up in bed and immeadiately signed "soda".  We all started cracking up (I had already warned the nurses that she was a Pepsi addict) and Shawn ran down the hall to get some out of the vending machine.  We got a little medicine cup and gave her a few cc's to start with.  She brought it delicately up to her mouth and then surprised us all by throwing her head back and draining it like she was taking a shot!  For the next few hours, she kept asking for more and we tried to pace her to make sure it stayed down.

Over the next few hours we received some additional visitors (Uncle Jason, Papa Russ, Aunt Kristin).  Instead of IV fluids we started up some Pedialyte through her tube and it wasn't long before she was ready to get on the potty.  Unfortunately she was not willing to go back to her bed and kept falling asleep in my arms on the couch.  Finally, we didn't have a choice but to face her wrath and get back in bed.  She fought and cried for a good 1/2 hour before finally calming down and started coloring with Daddy.

As we neared dinner time, everyone left except Travis and I and then Uncle Jeff came by with some balloons and a stuffed bear.  Peyton was doing so well that he suggested we head down to the cafeteria to get something to eat.  We had just sat down with some food when the technician came and got us.  Primary Children's has terrible phone reception and apparently he had been trying to call us.  Peyton was starting to get a little sad and ask for me so we brought our food back up to the room.  By the time we got there, they were doing fine together.  After eating, Travis and Jeff headed out for the night.

Once again, Peyton needed to go potty and was unwilling to get back in bed.  The technician suggested we let her get in the little pink coupe car for a ride around the hospital.  Peyton was thrilled and for the next hour we went up and down the halls of the 3rd floor and she waved to all the nurses and patients.  To get her back in her room the technician bribed her with a new toy.  Later she bribed her again with a new stuffed animal to hook up her feedings!

Peyton was in no mood to sleep and we searched up and down for a Caillou video but eventually she settled on Wiggles and Angelina Ballerina.  At 11 pm she finally drifted off but she was not sleeping deeply.  If I moved or even breathed she would start kicking and hitting in her sleep and yelling, "no, no, no."  The nurses thankfully left her alone most of the night.  At around 2 am she caught the hardware in the sheets and since they were pulled so tight she couldn't move.  She woke up in pain and angry so I shifted her so that she was lying on my tummy with her legs between my legs and she slept that way the rest of the night.