Here We Go Again

I just started this blog today, but it's been a long time since I've had a big update in general. We've moved into a different house, a three bedroom finally! Brayton has his own room, and the girls are sharing. Destiny is 6 1/2, Nikiya is 3 1/2 and Brayton is now 20 months. He is walking, talking some, and into everything like every other kid at this age. He weighs about 28 pounds, and is wearing size 3T clothes. He's almost as big as Nikiya!

My husband is working as an exterminator now, he has been there since August of 2009. They know about Brayton and the need for trips to San Francisco and work with us with everything. Rick has his own work vehicle, and we now have steady, reliable income, and things were really looking up for us. We got on our feet finally since Braytons birth, and we've been enjoying all of this time we've had as a family.

Brayton was eating by mouth for a while, only pureed baby food, but it was a start. After about three weeks though, I noticed the food was coming out immediately, before he could even really swallow. I called San Francisco and we ended up going down there for a swallow study. Most kids with Brayton's defect end up needing these surgeries, called dilations, to open the esophagus since it tries to heal, and starts to constrict. Brayton had never had one before, and we were hoping that this would show it was just some fluke. In Brayton's case, it seems as if his case is never straight forward. It turned out, he did need a dilation. I've heard from other people though that a dilation is a pretty standard, quick procedure and that we'd be able to go home the same day.

We went for his first dilation March 5th, last Friday. We waited for four and a half hours before he was called back. Finally at 2pm, he went back for surgery. An hour later, he was out and in recovery, still sleeping. The surgeon came in, and she told us that Brayton's esophagus was closed to the size of a pin point! How was he breathing? It's amazing. He hadn't appeared to be struggling at all. She tells us she was able to stretch it to the size of her pinky, but that we need to come back next week for another one, and then every other week after that for some time. That was a shock to us. We definitely were not expecting that. So here we go again with the frequent trips, and hospitalizations. I don't mean to sound ungrateful and whiny but I just wish he didn't have to go through these things. When Brayton woke up from surgery, he was angry, and rightfully so. His throat hurt, he was groggy from the anesthesia and they had given him some Versed to try and keep the pain level down. He was delirious, and didn't know what he wanted. He kicked and screamed and cried. We tried to hold him and comfort him but he fought us off, yet wanted us when we put him down. He arched his back, and swung his little fists at us. I had never seen him this upset. He spit up some blood which scared me but is normal considering they just stretched his esophagus. Finally, after we left the hospital and almost reached the Family House, he quit screaming, and finally seemed to get back to himself. He slept the rest of the day and by the next day, was fine.









We are heading down again tomorrow since his surgery is Thursday morning. We have to check in at 8am, and he will go back around 10am. We are going to try to head home the same day so that Rick doesn't miss too much work. I am not looking forward to this trip again. It feels like we just got back. Well, we pretty much did. We came back home three days ago, and we're off again! I hope he's not so upset this time around. It was sad to see him so worked up.

At this point, the surgeons don't know how long we will have to travel back and forth every other week. They said they will assess him with each dilation, and go from there. I just hope it's not long.