Family: forever, for always, and no matter what

Saturday, August 25, 2012

Super Heroes are for real!!

I used to think that super heroes were pretend, but considering what Kaylee as been through this summer, and the grace that she has shown through it, I'm now convinced that super heroes are for real. She is Wonder Woman! I honestly thought that our last trip to Mayo would be tough for Kaylee simply because of what she'd already gone through up there this summer. Kids are smart and she knows that every time we've headed North this summer, she's been through the ringer. Kaylee is Kaylee though, and she came out of this one like a champ, yet again! I honestly don't know that I know anyone who is stronger than she is! I sit back in awe of all that she has to go through, and yet she is still such a happy, funny, little girl. God is good!!

This final trip was a short one, but none the less, it still required another stay at St. Mary's hospital. The plan for this one was to put Kaylee under (again) and check her airway to see how everything was healing from her last surgery. Once that was done Dr. Coffer would then put a smaller trach in place of Kaylee's current one. Once we could see that Kaylee could handle the smaller diameter through the night, we'd then try to cap her trach off to see how she'd do. Sounds simple, and it was, for the most part.

We had to register at the hospital at 10am. Once all of Kaylee's vitals were taken, we were sent back to the waiting room until they were ready. Finally at about 11:30ish they took her back to pre-op. We got her changed into her hospital jammies and again waited. The anesthesiologist gave Kaylee some meds to help relax her, and just like the last time, the laughter began. Kaylee was laughing at just about anything, which then had us all laughing. For the first time, I wasn't asked if I wanted to take her back into the OR. They came and got her from me, which was not nearly as easy as I had thought it would be. Kaylee was fine with it, but it really tugged at my heart. Back to the waiting room we went. We waited, and waited, and waited, and finally they came to get me so I could go back to recovery with her.  She was awake and MAD!!! She wasn't happy with the nurse and in true Kaylee fashion, she let her know. Kaylee had her arms crossed and was turned as far away from the nurse as she possibly could. I couldn't help but laugh about it. I was able to rock with Kaylee while still in recovery and she went right to sleep. This was probably the best she has been during the recovery period for any of the 3 procedures done this summer. However, just like the last two, her front teeth managed to get knocked loose again! They hung on for a little while, but this afternoon one of them fell out. I'm hoping the other one will make it. Thank goodness they are baby teeth! Kaylee was able to be in a room on the general pediatric floor instead of the PICU this time. We had great nurses who did awesome with her. In fact, when her IV was really bothering her, we didn't have to do much to talk them into just taking it out. She has such a hard time with IVs and they always end up sticking her in the foot. This one was right on the top of her foot just were the foot and leg come together. It just wasn't working for her. Every time she'd try to move her foot or even a toe, she'd freak out! She also seemed to have a tougher time coming out of the anesthesia this time too. I'm not sure why, but she just couldn't get settled. She was SO tired, but she struggled to get good sleep. We were up several times during the night, and I began to wonder if the smaller trach was going to be too tough for her. Kaylee finally settled into a good sleep at around 2:30 that morning. Naturally, the doctor was in to do rounds at 6am....not a minute after. She woke up and couldn't get back to sleep. She was grumpy and nothing I did would fix it. Later that morning she threw up but then seemed to finally come around a little. It is funny how it is so much like a "switch" with her. She can be so out of it and sick, and then just like that, she's ready to go again. (Another reason I think she must be Wonder Woman.) The respiratory therapist came in around 9am to try to cap her off. They told us they would try to do it for 15 minutes, but she might only be able to handle it for 5 minutes or so.  I was really nervous that this wasn't going to go well and that she'd only go for a few minutes before she'd begin to struggle too much. Kaylee must have remembered that this RT was one who knew her from her time in the NICU a few years ago. It was time to show off in true Kaylee style. He put the cap over her trach and stood back to watch. Kaylee didn't panic, but she wasn't a huge fan of it. She kept trying to get me to take it off, but once we got her focused on something else, she was good to go. 15 minutes later (!!!!) we took the cap off. She did it!!!! I couldn't believe it. For as sickly as we was an hour before, she sure became a complete super hero in a short 60 minutes. The RT was very pleased with how she handled the trial. He felt like she was taking in a good amount of air with each breath, but not having to work too hard to do so.  About an hour after the capping, we were loading up the truck to head home. Kaylee was exhausted and within 10 minutes on the road, she was out. It didn't last long though, 30 minutes later she was awake and ready to go again. She never did fall back to sleep on the trip home.

In the last few weeks we have been able to cap her trach for up to 60 minutes at a time. The other day she went for 3, 1 hour increments with it capped off. She did really well with it each time. I really don't think it will be too long before Kaylee is able to handle it being capped for the majority of the day. I would love to have it capped off during her time at preschool just to help filter out the germs and whatever else 3 year olds pass along. Yes, I did mention preschool. As hard as it is to believe, Kaylee will start preschool the Tuesday after Labor Day. She'll be attending Discovery Kids two days a week. The school district and AEA have been amazing to work with and things have gone really smoothly. I'm hoping it all continues that way when school starts. Kaylee's nurse will accompany her to school and speech services and a school car will provide their transportation. I'm so excited to see how she changes after having spent time with other kids her age. She's not really had that opportunity before now, so I'm hoping that by being around other kids, she'll work harder at swallowing and trying to talk so she can be like them.

Talking about school, Dylan started First Grade this last week. I LOVE having him in the same building as me. It is great to be able to walk him down to his classroom each morning, and a couple of days I even caught a glimpse of him in the hallway later in the day. I was deeply saddened by his embarrassment of me however. I asked him why, when I saw him in the hallway, he wouldn't wave at me. His reply, "I don't want my friends to know that you're my mom." SERIOUSLY???? I had expected that around 3rd or 4th grade but 1st??? Geeesshhh!! We are still working on getting used to that earlier bed time and a much earlier wake up time. He's done good so far, but by the end of the week, he was exhausted. Who am I kidding, I was exhausted too!

So, as my little Wonder Woman is snoring in her bed, the tiny little tooth fairy has slipped in and paid up. Troy thinks I'm crazy for wanting to save her first "lost tooth" but I just can't help myself. I'm sure in 15 years I'll think it is pretty gross, but for now, it is tucked in an envelope in my drawer. I think Dylan might be slightly jealous in the morning when he sees the tooth fairy has visited his sister. The poor boy doesn't have a single loose tooth yet! :-)