Grayson’s Surgery

I apologize to those of you who have been waiting for an update on Grayson’s surgery last week. I’ve been meaning to write one since Wednesday but Ryan, Charlotte and I all had a mild stomach bug for a few days, which was exhausting, and then we had Charlotte’s birthday hoopla yesterday. My sweet girl had such a fun day- her daddy had off work for MLK day, so we met Grammie, Aunt Hannah and Uncle David, and “Baby Theo” (as she calls him) for breakfast. Then later in the afternoon we went to an extra music class since we’ll miss her regular class Saturday because of her party. All was great and wonderful until about 6:00 when Charlotte suddenly spiked a fever. I was thinking teething but it was a looooong night- she was up every hour until about 2:00 am screaming and was burning up. I only took her temp twice and it was 103. Poor sick bear. She’s a little better today, but still running fever and just feels crummy. We have her 12 month well-check tomorrow and I have a feeling I’m going to have to change it to a sick visit.

But back to Grayson. The surgery could not have gone better and we had a fabulous experience at UTMB in Galveston. I was so nervous about being in an unfamiliar hospital and not knowing if we were going to have any issues with them following the Mito anesthesia protocol, but the anesthesia team was totally on board and already familiar with the protocol. The surgery was scheduled for 9:00 am; we had to be in Galveston at 6:45, so it was an early morning around these parts. Thankfully, there was no traffic in Houston that early (we left at 5:30 am) and we made it there in plenty of time and had no trouble parking and getting our parking validated.

The pre-op moved quickly and efficiently. We had a room with a bed for G, so he was able to lay down comfortably while we signed all the consent paperwork and they took his vitals. They gave him a sedative about 30 minutes before they took him down to the OR, so he was chilled out by the time we saw the doctor. He was listening to his Veggie Tales on his ipad with headphones, and the doctor told us just to leave them on- so he was wheeled into surgery with Bob and Larry still serenading him (oh brother). We were so impressed that they took him back at exactly 9:00- both Ryan and I are very impressed with timeliness!

The procedure was quick- lasted about an hour, and the doctor came and got us and said it went really well. I then was taken to the PACU to wait for him to wake up. We always say Grayson takes FOREVER to wake up from anesthesia, but as he’s gotten older, the time has gotten much shorter. I don’t know exactly how long it took him to wake up, but it definitely was less than 2 hours. He woke up groggy but didn’t seem to be in a lot of pain; after a few minutes we were taken back to the floor where we started and waited to be released.

IMMEDIATELY we noticed a huge difference in the tone in his legs. I almost couldn’t believe how loose they were (are). Changing his diaper and his clothes were so easy and even picking him up was easier. Simply amazing.

We were released and were home by 3:00 pm. I can’t say enough good things about our experience- the nurses were wonderful, everything moved efficiently, and we were provided with a care packet and prescriptions all together in one place.

It’s almost been a week since the surgery and Grayson is doing really well. He’s been on pain medication but I don’t think he’ll need that much longer. His orange Childrite seat (big Bumbo) that he sits in a lot is the most remarkable- it was extremely difficult to get him in and out of that chair prior to the surgery because he would squeeze his legs so tightly together. Now, we lift him in and out with absolutely no problems (although we do need to look into getting him another kind of chair because this one doesn’t support his head at all). Diaper changes are a thousand times less difficult, and it’s a lot easier to carry him from one place to another because he isn’t so stiff anymore. His incisions are healing nicely and he will be in casts for 4 weeks. After that we will have the casts removed and his orthotics place will determine if he needs new AFOs or if the ones he has will still work.

I’m feeling so good about this and are so thankful we were able to do something for Grayson that has already impacted his quality of life so positively!

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