Sunday, July 17, 2011

Friday, July 15th, 2011

Mommy just loves surprising me!  She woke me up at 6 am to head in to Primary Children's for some tests.  On Wednesday, she got a call from the scheduler that they had a cancellation today and hoped we could take the appointment.  So last night Mommy turned off my feeding at midnight and switched me to Pedialyte until she woke me up.  I got dressed still half asleep and then gave Daddy some kisses before we got into the car.  I was in no mood for tests and I cried a little on the way in.  When we arrived, Mommy let me throw some money in the fountain which brightened my mood.

When we made it to the presurgery area I had about 20 minutes to play before they called me name, but as soon as they brought me back to be weighed I knew exactly where I was and refused to get on the scale.  Eventually I stopped crying long enough to get a height and weight (28 lbs 1 oz) and then was led back to the exam room.  Once again, I knew I was in for some trouble when I saw the standard issue PJ's waiting on the table.  As nurses came in to update Mommy and get my blood pressure (147/76), temp and O2 saturations I was pretty upset so Mommy talked them into letting me wait to put on the PJ's until after I got the Versed.  A few minutes later they returned with the meds and I pushed them in.  Immeadiately they had me go to the second waiting area but warned Mommy to hold on to me since the Versed would take it's toll quickly.  With all our past experience with it, Mommy figured she had a few minutes but it was only seconds before I got all wobbily which meant she had to carry me to the play area and keep me sitting up to play despite my insistence that I could walk around on my own.  At one point Mommy had me sitting on the floor and had one arm around my waist, as she went to reach for a toy I fell face first into the carpet - the Versed is good stuff!

A few minutes later the anesthesiologist came by and let Mommy know that since I am rumored to be such a fighter in the post op area that he was going to try a different medicine that will allow me to wake up slower and calmer - Mommy was on board with that!  He told Mommy to put me in the wagon with the toys I was using and he would lead us back to the OR.  When we arrived in the hall and Mommy tried to take my hearing aids I threw a fit so he had Mommy follow him into the restricted area and had her wait right outside the OR door while he hooked me up to the anesthesia.  Once I started to drift off, he brought the hearing aids out to Mommy and she found her way back to the waiting area.

She had about 40 minutes to relax before Dr OGorman (GI) and Dr Muntz (ENT) arrived.  They brought her into the consultation area to discuss the findings.  Dr Muntz performed the laryngoscopy and bronchoscopy.  Although my airway looks great (no granulation tissue or granulomas) my airway is still pretty small and too risky for decannulation in case I had more surgeries and needed to be intubated.  Mommy was not entirely surprised but the discussion was to look at it again in a year or when most of the surgeries were completed.
Dr OGorman shared some photos of my internal organs and verified that although my button balloon was awfully close to the duodenum there were no signs it was creating any blockage.  She did say that when she did the endoscopy, placed the ph probe and got the biopsies there was signs of esophagitis (inflammation of the esophagus) but until the probe test and biopsies came back the cause was not known - it could be reflux but it could also be allergies.  Even if it was reflux, it wasn't too bad.  With that, Mommy had a few minutes to take it all in before she was called back to post op.

The nurse caring for me has cared for me in post op before and remembered what a fighter I was.  But with the new drug the anesthesiologist gave me, she and the nurse had plenty of time to talk because instead of taking me just a few minutes to wake up they sat together for almost 90 minutes!  When it came time to move me to my room I still wasn't awake!  While waiting in post op they had some discussions about where to put me and settled on the infant unit.  Although the infant unit is traditionally for children up to age 2, due to staffing that is where I ended up.  On the drive up I started to wake a little but fell back asleep before reaching the room and stayed asleep for another hour or so until Uncle Jason arrived for a visit.  Mommy was grateful for the iced coffee and bagel but didn't have much time to enjoy it before I woke up and was pretty ticked. In post op they had placed "no no's" on my arms to keep me from pulling out the ph probe but once I was awake enough to understand, Mommy told me she would take them off if I promised to leave the probe where it was.  I agreed and off they came.  Just as Uncle Jason was leaving, Grandma and Papa Smith came by to check on me too.  I was supposed to have a chest xray to verify the placement of the probe before eating but I had already gone 6 hours without anything in my stomach so Dr OGorman overrode her orders to allow me a feeding before heading down.  With a little in my tummy, the four of us and the nurse headed down to the radiology department.  Just like always I freaked out and needed several techs to hold me down to get the xrays but I stopped sobbing as soon as it was over to make sure I put in my request for a sticker - which I got.  Rather then riding in the crib on the way up, Mommy carried me and instead of putting me back in the crib when we arrived at the room, Mommy let me sit in the rocking chair and watch Caillou on her phone.

After a while, Grandma and Papa Smith headed home and Mommy and I got some time to relax a little.  Mommy had to learn how to work the machine attached to the probe and Child Life brought me a craft project, toys and some books to help keep me entertained.  Mommy and I had just finished up the craft project when Aunt Kristin showed up with a cool Barbie pool toy.  Mommy helped put it together and at first I played with it without any water.  After Aunt Kristin left, though, Mommy let me put a few cups of water in to really try it out.  Around 6:30 Daddy stopped by after work.  He and Mommy headed down to the cafeteria to get some dinner while I stayed and played with the nurse who I was already fast friends with.  When they came back I had some more time to play with Daddy and then we put in the Toy Story vhs tape.  Daddy headed home to my furry brothers while Mommy stayed with me.  When Mommy broke the news we had to stay the night I demanded to go home.  She told me that she had to stay the night at the hospital and could I stay with her to keep her company and I reluctantly agreed.  The nurse changed out the crib to a big girl bed so Mommy and I could sleep together.  We finished most of Toy Story and then read a few books.  I finally fell asleep around 11:00.  But sleep was not on Mommy's agenda.  She had decided to use my feeding pump from home which the nurse didn't no how to use and she also had to keep hitting buttons on the machine attached to the probe.  Since I was going to be getting alternating feedings of formula and apple juice every four hours - Mommy didn't get much sleep.  In addition, at 4 am then nurse tried to flush my IV and I bolted awake pissed off.  At that point I had been tolerating all my feeds so Mommy held me down while the nurse removed the IV.  But I was wide awake now so Mommy popped in the Little Mermaid and I fell asleep about 20 minutes in.  Mommy fell back to sleep with me one last time.

Peyton Nicole Smith

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