(Disclaimer: I wrote the first couple days up when we were living them, but then the wi-fi at the hospital bit it and I lost it all. So, I’m dividing these as best I can…)
The day started before it even actually began. Since Alyssa could not have anything orally for 8 hours prior to her surgery we had been bumping her seizure meds back so that I could give them to her at 1130 and we wouldn’t have to worry about them for a few hours after her operation. So, 1130 rolls around, I give her her meds, and she screams for 90 minutes off and on. Seriously she would NOT go back to sleep. Of course by the time she finally did get back to sleep I was so wound up there was no way I was sleeping. About 2 am I crawled into bed… which made that 530 am alarm clock SO much fun. We got up, got her up and dressed, loaded up the car, stopped for a pack of disposable diapers, drove through for coffee and made it to the hospital at 630. Things were by far smoother today. Still had to do admitting and such but we wound up back in the pre-op room right on time. She was in a great mood. All was running smoothly as she played in the oh too nice pre-op room filled with power wheels and ride on toys (at least softens the blow that your wallet takes LOL). Then, in walked her normally chipper GI doc and his marvelous NP (we will call her Ms. T from here on out) came into the room. I could immediately sense tension but didn’t want to jump to conclusions. Well, turns out there was a mix-up at the anesthesiologist’s office and so he was going to be late. The GI had a full plate ahead of him and it was kind of one of those ‘this is NOT how I want the day to begin’ situations. He took the time to explain to us what was going to happen (in the detail that I would have typically spared Neil and the rest of you. I was listening and silently cringing inside as I watched Neil turn away. I forget that I like to know all the details…but some of them are best left out when it comes to others LOL) and let us know how long it would take. In addition, we talked about her diet after the fact. He wanted her on elecare…now mind you… elecare is the most hypoallergenic formula on the market but also the most horrific smelling concoction ever. Also, Alyssa didn’t tolerate it by mouth AT ALL. I was nervous, made a comment, and he was short fused. It was weird because it is so not his standard temperament. I looked at Ms. T and decided to just bite my tongue, roll with it, and deal with it if it became a problem. The results of the gastric emptying test had come back… normal?! …yeah… right… ok.
So, the GI and Ms. T stepped out to prep, grab some coffee, and wait for anesthesia to get there. Luckily, when he did arrive, it was the same guy who did it for her last esophagus test. Even amidst his crazy morning (which included a speeding ticket on the way… fun!) he was still pleasant upon entering the room. Within minutes we were in the procedure room. I stayed until she was out and then waited with Neil for them to finish. She did great. Tube was in place and whats more is the esophagus was completely clear. It’s amazing how healthy it looks. The temporary PEG tube is in place. This is a bit different than the final button that will be there. The premise of this is to apply pressure on the stomach and hope that we can get it to slightly adhere to her inner abdominal wall. That way when they go in in 6-8 weeks and replace it with the button everything will be nice and healed. It has about 6 inches of plastic tube that is sticking out of her belly all the time, but once she gets all mended up it will be gone 🙂 .
When she started to wake up we went back to the recovery room. Since there was confusion about how long she was staying, they didn’t have a room for her. Our recovery room stay was quite a bit maddening. At first there was a kid that would.not.stop.screaming. Then, the nurse was just… something. I had stressed that Alyssa neeeeeded her seizure meds by noon (it was currently about 1120) because I was not going to risk her having a seizure this close to a major procedure. So she comes back a few minutes later to tell us she is going on a break but the other nurse is there if we need her. I said “OK and she knows she needs her meds soon?” (haha cuz I’m evil like that). Well, the substitute nurse called Alyssa’s GI to get approval to give them through the tube and then just block it off for an hour while she digested/absorbed it. So, we got her meds in her and about an hour later it was time to head up to her room. They were giving her Demerol for pain so she was pretty groggy. Once we got settled our parents stopped by to bring sustenance and support. Ah, you gotta love parental units 🙂 .
They wanted to run her on a 12 hour feed from 7pm to 7am that would give her an ounce an hour. Well, they ran from 7-830 and then she wound up wearing what had been put in. So, we shut it off and planned on restarting it after she got her meds. They began the feed at 9 and she’s asleep now… so we shall see what tomorrow brings!… or what the evening brings… LOL
A few pictures….
Pre-op. Now, remember… this is a child who has not eaten in 8 hours. It’s so silly. She is in a better mood when she has to fast than when she has to eat. LOL Gotta love the hospital scrubs 🙂
Maybe my favorite pic ever. I love the blurred hands. She is getting SO pro at clapping.
and post-op *swoon*
Special Needs... Normal Desires 