Thursday, October 05, 2006
Kansas City update
Well, we are home from our trip to Kansas City. I'll get to the important details first, and then I'll fill in the details.
1. Kaedra was accepted into their program
2. Her surgery is scheduled for Nov 17th
3. We loved Dr. Price
4. The hospital is beautiful and created totally around children.
The trip took almost exactly 4 hours from the time we got on the Creek Turnpike to the time we parked at the hospital. We did not have much traffic, only a few cases of construction, and we didn't have to make any stops on the way. It was difficult to find the actual hospital because there was construction on all around it, but we did, eventually, find it. Kaedra was upset to be taken straight from the car seat to the stroller, but she got to get out and play in the waiting room.
We met with two doctors and the nurse in charge and we liked them all very much. They referred to Kaedra's case as "tricky" which was funny to us, because we see her as so normal! I think we forget the intricasies of her "condition." LOL! They compared her to our internet friend Collin Langston who was (I think) their second patient. Kaedra is now their 16th VEPTR patient. What a difference that is, rather than being one of a couple hundred! They asked about her development and I told them what I tell anyone that doesn't know her: She is a normal two year old with a lot of heavy equipment! She pretty much showed them that, the whole time she was there. She walked around, played, flirted, giggled, was shy...all the normal toddler stuff!
After taking some xrays, all in all, the appointment was about 1 1/2 hours. Here is some of the other info we got:
1. Kaedra would be admitted into and discharged out of ICU. (we are thrilled about that. We had a horrible experience "on the floor" in San Antonio. Also, we were never allowed to leave her in San Antonio. Not that I am saying I want to leave my baby, but I want to feel safe going to the bathroom, which I didn't, in SA. At least the people in ICU are used to dealing with vent dependent patients.
2. You are not allowed to sleep bedside, but they do have a dorm outside of the ICU with beds and a community bathroom. You can be with your child 22 hours a day. (there are two hours of shift change where you can't be there)
3. If the dorm is full, they have fold out chairs in the waiting room.
4. The Ronald McDonald house is right next to the hospital and is free. It is also newly renovated and is BEAUTIFUL! The doctor told us they had suites and when we drove around the outside, it looked like an upscale apartment building.
I don't know what option we are going to use yet. It will depend somewhat on who goes with me. Kaedy is never alone at home, except maybe a minute or two when she first wakes up in the morning or after nap. And she is not used to being in a crib except when asleep, so I can't imagine leaving her there by herself for long. My friend Tarry is looking into going with me, Sherria has offered, and Brittany really wants to go - so we have a few options. Someone HAS to go with me, because I can't drive without a helper in the seat next to Kaedra (in case she becomes disconnected, she needs more oxygen, etc, etc) But where we stay will depend on who goes, what we decide to do about sleep, and what we feel about the unit.
Time to eat dinner and watch "Hoodwinked." I will finish this later!
at 5:19 PM