Not Much of a Day - Rainy St. Loo

Braving the Rain & Wind

Hi all. Doug is just reading bedtime stories to Fiona as I provide our last entry for a bit. We had hoped to do some fun stuff today but the weather didn't hold up. It poured. Ahhhhhhhhhh. We did get a good sleep-in done, which caused us to leave the hotel a little late. We decided to go to the arch during the rain, and hope for later clearing. Once there, we took a weird elevator/tram/amusement park ride compartment up through the arch. It was not for the claustrophobic type. A nice enough experience but Fiona was not impressed. She had zoo on her mind, and her mind can be a bit pitt-bullish as you know. When we got out, it was pouring and almost 4pm. So no zoo.

Determined to keep the evening relaxed and early, we headed back to the hotel to plan supper and bedtime. Fiona was fine once in the car and watching videos again, but we were not. We had both hoped for one of those idyllic child-parent days as a last memory for her before surgery, but it just wasn't in the cards. Not surprising, that's also about when my panic started to set in. Not so much about doing THIS surgery, just angry PTSD stuff over why I even have to be in a position to take my daughter into yet another surgery. I think it has been over 20 now.

The plan is to give her another shot of food just before midnight (a few extra calories doesn't hurt). Then we'll get up at 4:30am to give her a shot of apple juice and her morning medications. We have to be at the hospital at 6am. Surgery is at 8am. (yay! fresh doc) They will be giving her some Versed - a drug that helps reduce anxiety and basically erases the memory of before surgery. There is no pain before putting her under (Mary Bridge could learn a thing or two from this). Either me or Doug will accompany her into the actual surgical room. They give her a gas cocktail that includes nitrous oxide with a flavour. I told them that given her aversions, it might be best to go with the good old chemical smell instead of strawberry or bubble gum. The last thing I need is to be in feeding therapy one day with strawberries and she has a bad memory! They will put her to sleep, and then we leave. The anesthesiologist puts the IV in and puts her into a deeper sleep appropriate for the kind of surgery she is having. The surgery itself is about 2 hours. Heading to recovery at about 11am. She will be extubated in recovery. She will spend one night in the PICU (Pediatric Intensive Care Unit) to monitor her vitals and for pain management. She will be getting Fentanyl, which I'm told is better than Morphine. It isn't processed in the kidneys. I can stay with her in the PICU, but there is a question as to whether I can sleep there. I'm not talking about reclining or anything. Even dosing off may not be allowed. Supposedly they have an awesome parent lounge with lockers and recliners not far from the PICU, so I may be spending the night there. I can't guarantee that I won't dose off during the night. The medical assistant to Dr. Park said it kind of depends on Fiona's nurse for the night and how she likes to run the ship. Either way is fine with me. Let the professionals feel at their best to perform their best. We still have the hotel for Friday night, and they only let one parent in the PICU, so Doug and I are going to figure out who goes back to the hotel and when, for a good sleep. On Saturday, Fiona will be transferred to the Neurosurgical unit of the hospital. Fiona will be out for at least a couple of days - mostly for pain management reasons. By the 3rd day she will be on regular Tylenol, and starting to sit up at about a 30' incline. Still not a lot of movement. Monday will be the big day for movement. PT comes in the morning, and we start the process of rehabilitation.

So all of this is what they tell me to expect, but who really knows (except my parent friends who have experienced it) what it will actually look and feel like. Doug flies back to Tacoma on Saturday night so he can go to work for a couple of days, then he's going to catch the red-eye back on Tuesday night (arriving Wednesday morning) in time to be there for discharge and flying home. It will be hard for him to leave. Fiona is going to have a lot of questions for me when she wakes up!

I forgot to mention Fiona's behaviour lately. She has been wanting to walk EVERYWHERE. Very interesting. Maybe she does have some understanding that she is being "evaluated", and is trying to get herself out of a surgery. I don't know. Regardless, it is great to see her initiative despite the impossible positioning of her feet and legs. I tried to talk to her about it again tonight, but no success. I decided to show her some of the before and after video of the children who were using walkers before the surgery and how they are walking after the surgery. I thought maybe that positive visual might trigger some questions, but no. If any of you are interested in looking at those videos, they are kind of hard to find. They are located at the St. Louis Children's Hospital website under "Patient Selection", way down at the bottom. There are some remarkable ones. They have a couple of adult patient videos too that are particularly exciting. Young adults going from a pretty messed up gait (walking on their own) to being able to run!

She has been asking to take swimming lessons. That's great because she will be starting 2 swim sessions a week 2 weeks after the surgery. Also, when Doug told her that the surgery would make her legs work better she said "Then I can play soccer?" Where did that come from? Our response was "Well, I don't know about soccer, first we have to practice walking". I do notice that whenever there is a show on where there is a little girl (cartoon or real) who is dancing or jumping up and down, she always asks for the channel or show to be changed. It must be hard for a little girl her age. Sometimes she'll wake up in the morning and ask me if she can dance one day. I know she has probably had a dream where the legs are working better. It must be hard to wake up everyday and feel rigid after something different in a dream. I hope that after this surgery we can at least move a little closer to some of that normal stuff.

Chillin'