Today my facebook notifications let me know that this is the three year anniversary of when Belinda was first admitted to the hospital at Children’s in OKC for what would eventually be diagnosed as achalasia. This was a rough reminder today, because she has been having more trouble swallowing lately.
Her car isn’t working, and the repair will cost maybe around 2800, which we don’t have, obviously, so I drove this morning to Alva to bring her back home. She was excited because her friend was going to spend the night to celebrate the friend’s birthday tomorrow. I asked her to drive partway back, and we decided to stop at Chick-fil-a in Enid, have lunch there, and then have her drive (because my behind was killing me!) We ordered on the app, very smart, because it was super crowded when we got there. She got nuggets and macaroni, her fave, and I got a salad with the cut up nuggets in it – delicious! But she’d only started to eat when she sat up straight and seemed to retreat into herself. This is the sign that food is getting caught, and she needs to focus on it. After a minute, she excused herself to the bathroom.
Long story short, she didn’t get it all out. One spot still had food stuck in it. She could sort of drink water around it, but she couldn’t eat anything else. So we packed up our food and went back to the van. Before we got in she asked if I had any of her vomit bags and I did, so I got it out of the pocket behind my seat in the van and she got in and used it. And she kept using it. Everything was coming back up, food and water both. We stopped in Kingfisher because I’d promised Sarah I’d pick something up and I also decided to get things for a roast beef dinner so Belinda could take some back to Alva with her. She got the hiccups, which happens when she gets food stuck, and she stayed in the car with the a/c on while I hurried in and out. The hiccups hurt, and she’d drink water to try to get rid of them and then have to use the vomit bag again.
She almost had the bag completely full when we got home, and I said they were little, but they’re really not that small. It was a lot. I took it from her and dumped it out by the fence. She said she hoped that some little creature would find and be happy with the water and food in it. At least that was something positive.
We should have gone to DC during the summer break. She didn’t want to, because of her internships. But now she won’t want to go until Christmas break. I sure don’t want to do this. I don’t want to email the GI department and get the ball rolling. I don’t want to contact NORD and see if we have anything left in her grant for hotel and ground transportation. I don’t want to call Mercy Medical Angels and see if we qualify for plane tickets again. I don’t want to fly. I don’t want to have to be the grown-up and take the lead at the hospital. I don’t want to have to figure out how to pay for meals when we’re there or how to get from place to place. I’m tired. I’m so tired.
And yet I know I will. I am not going to forget the lovely blessings that have happened lately! Ben’s new job is going great, and I did win that Kindle Fire from the library adult summer reading program, an awesome bonus. Ben mowed the lawn today!
I also wanted to mention that even though my window is broken, Ben keeps taping it up when I ask and that is greatly appreciated. But last Sunday, super early, I left the girls at home and went to Newcastle to get stuff to make the lasagna Belinda requested, and I realized the window was part way down and someone could get into my car. (Although like who would, right? Ha ha.) I tried to think of a good place to park it and then I wondered if the oil and lube department was open that early, since I have not had an oil change in forever. Maybe once since the job loss. But I had enough money on a credit card and with his new job I thought it might be a good idea to just go ahead and get it done, and then pay for it when he gets paid. The people at the auto department had to call me back after I’d checked in, to make me sign something that wouldn’t hold them liable since THERE WAS NO OIL ON THE DIPSTICK. Whoops. There was still a little in there when they drained it, though. And I took Belinda to Alva the next day. I could have completely ruined my car, and at such a terrible time with Belinda’s car also out of commission. I use my car to drive her, and drive Sarah, and also get Bennett to work when he needs rides. And I smiled and thanked God because if my window hadn’t broken, I wouldn’t have worried about someone getting in my car, and then I would have just waited on the oil change until we had money in hand. But God makes all these things happen in the background that do work together in a wonderful way. Engine wasn’t knocking or anything. I wouldn’t have known there was an issue if they hadn’t told me. I mean, the service engine soon light is on but that’s been on forever.
Anyway. That’s the update. Belinda wants to go back to Alva tomorrow and I don’t think I can bear to drive six hours again. She came home and slept in my bed this afternoon and I’m glad because I know that food in there is hurting her and there’s really nothing we can do. I can get the ball rolling on scheduling her next procedure though. So that’s on the schedule for next week.
P.S. I don’t know why Belinda keeps having trouble. There are parents in the online achalasia group whose kids got the POEM procedure and have gone back for follow-up endoscopies but haven’t needed any more dilations or had any other issues. I sure wish it would be a little easier on her like that. She was really sad about it today, and I know she was thinking about how she has to deal with this her entire life. I don’t like to think about that either. It’s so discouraging. I wonder if the Ehlers-Danlos tissue connectivity disorder is why she keeps having trouble.