Hello friends, thanks for checking in. First and most importantly, Mariel came through her surgery very well. After going through administrative procedures, and the inevitable O.R. delays, they took her back to anesthesia yesterday around 10:30 am and surgery began about an hour later. We were updated throughout that things were coming along fine, but did not see her again until after 5:00 pm. This we expected. What we didn't expect was Dr. Paley to tell us that Mariel will need another surgery in about 2-3 weeks. We'll cross that bridge in another post, once we have more information from him. The short story is that it will be minor and most likely outpatient. When we were reunited with Mariel in recovery, she was still groggy from the anesthesia, but she was so goofy, cute and loving. She didn't seem to have any idea about what had just happened. That of course changed quickly over the next hour. It was several more hours before they finally had us settled in our room. Last night and today have been very difficult. Mariel is understandably quite uncomfortable, and very angry at anyone (other than mom & dad) who comes near her. She's got her finger pointed crooked style, stink eye squinted hard and screaming at all RN's to "get their stinkin hands off of her -- you get out of here right this instant and don't you come back - EVER!", among many other colorful Marielisms. She spent much of the night and today yelling "get this thing off of me" -- this thing is her "Fixator" (which she is calling her Fix-er-rator). It is quite a device. She is having lengthening done on her femur as well as her tibia so the Fixator is attached at her hip and runs the length of her leg with various twists and turns. It is an intimidating looking machine - serious hardware. She also has a host of other tubes and monitors attached to her that are all beeping and tangling at any given moment. Needless to say, getting any quality rest has been near impossible. This we also expected. The hospital is just a tough place to be. As parents, our emotions are all over the place. It is hard to keep reminding yourself that this is for the best when your child is so miserable, but we know these are the hardest days. This will get easier and the end result will be worth it. Now it just feels like the end result can't get here fast enough. We are full-on in it, ready to hunker down and do what needs to be done to get there. Looks like if things progress according to plan, we should be discharged Sunday. This will depend on how Mariel adapts to the pain management plan once her epidural is removed. We expect that to be tomorrow and will see how it goes. She is on a cocktail of meds, but they are all IV. She does not do well with oral meds - AT ALL, so mom and dad need to feel confident we can manage her pain at home before we can get sprung. They will also be getting her out of bed tomorrow for a trip to the playroom with the PT's. We need to get comfortable with transferring her from place to place, so we'll be practicing that too. Some positive last thoughts are that her temp and other vitals look great, she's got an appetite and is eating a bit more -- and I get to go home to take a shower now!
More to come as the drama unfolds. Again, thanks for checking in on us - and please know how much your emails, calls, texts and facebook posts have meant to us. We are feeling the love and it makes all the difference! Be well, friends.