Saturday, May 24, 2008
Friday, May 23rd, 2008
When I woke up this morning, Marianne got me ready for the day. Yesterday, she bought me new hair bows and a new summer dress. She said it was just so cute and she thought of me so she couldn't pass it up. She put my hair up in pigtails for my Shriner's appointment today.
When Mommy came out to see me she noticed right away that I was really warm to the touch. She took several temperatures and came up with all sorts of readings - 99.8, 100.5, 97.9. I usually run about 97.2-97.9 so she wasn't sure what to make of all the different readings. She decided as a last resort to get a rectal temp (not fun) since it is the most accurate. That came in normally, but I was still really hot to the touch so Mommy gave me some grape Tylenol. I was grumpy most of the morning but eventually the Tylenol kicked in and I wasn't so hot anymore. I went down for a nap with Lucille and after 2 1/2 hours my Mommy had to wake me up to go to my Shriner's appointment.
The plan was to see my hand surgeon at 1 pm, the foot surgeon at 2:30 and hopefully get an evaluation by the anesthesiologist in between. We got right in to see Dr. James but when Mommy explained the proposed surgery schedule for my jaw this summer, Dr. James decided seeing the anesthesiologist was unnecessary. Basically, by the time I would come in for hand surgery, many things may have changed. My jaw would be distracted and I may have already been decannulated. Since Dr. James didn't want me to have to wait around until 2:30 to see Dr. Popejoy, she looked at my feet and said for the time being not to do anything special. I should be fine to walk without any orthotics. Dr. James thinks the anesthesiologist may not want to put me under for the hand surgery if I have been decannulated since my airway will probably still be pretty small. Instead, he would probably want to wait to do my hand surgeries when I am older - around 4. So Dr. James would like Mommy to call her after my jaw has been distracted but before the decannulation. If I pass all the tests to get my trach removed, Dr. James would like to try to squeeze in my hand surgeries before the trach removal so I don't have to wait until I am older. My right hand would be an outpatient procedure and my left hand would be an over night stay. Normally, the would do them separately since both arms would be casted for 4-6 weeks. Since I am such a special case, they would probably do both at once so that I don't have to put off my trach removal. Mommy knows it takes several months to get scheduled for surgery so she asked Dr. James how that would work out. Dr. James said that she would cancel another child's surgery even though they may have been waiting several months in order to fit mine in. At this point, we'll just have to wait and see what happens, but it could make for a very exciting summer!
After a lot of phone calls to the nursing agency today, my Daddy talked them into letting Marianne work tonight. My parents have been my Friday night nurse for three months now. The agency is having a hard time finding anyone to work the shift but Marianne has wanted the extra hours. Although the agency has only agreed to this Friday night for now, it is a start.
When Marianne came at 11, she told Mommy how much she likes our family and we are so great to work for. She said many times she feels she is just working for the paycheck to pay the bills but since taking care of me, she has really begun to enjoy nursing again. She said I have put the spark back in her nursing career. She told Mommy I have given her direction in her life and she now wants to go back to get her RN and wants to work in the NICU with babies like me. Mommy thought that was so sweet. As Mommy told Daddy, "Just one more person whose life has been changed by Peyton."
Peyton Nicole Smith