We are hoping to stay at the Ronald McDonald House when we are in DC. We got a referral from the Thoracic Department at Children’s National, but it’s not a for-sure thing. Openings at the Ronald McDonald House can vary because if a family is there and they end up needing to stay longer because of medical need, they obviously aren’t going to throw them out, so they can only take new people if there is availability. I think the odds are reasonable that we will get in, but again, not a sure thing.

There are two Ronald McDonald Houses that serve Children’s National. One is very close, and one is a bit farther away, in Virginia.

We will find out if we can get in three days before we go. If we do not get in, I will book accommodations elsewhere at that point. I guess we could also book a hotel now, and then cancel it ahead of time if we get in the Ronald McDonald House. I’ve never done that sort of thing before but I know of other people who have. I suppose I’ll research it this weekend.

I did a cursory investigation into hotels and it will cost us maybe $1500 if we need to do that. So that’s not fun. I am also concerned about getting back and forth to the hospital if we have to do a hotel. Some have shuttles but it doesn’t say where the shuttles go to. So I’ll need to call each of them, yuck. Since it’s just going to be Belinda and me, I am hopeful for the Ronald McDonald House because the closer one has a shuttle (we could also probably walk it, if she’s up to it) and the farther one includes a free Lyft ride to and from the hospital each day. That would be a lot less to think about and have to deal with. My brain feels like it’s already at max capacity.

I just remembered that I need to figure out how we’re going to get from the airport to wherever we’re staying. I am growing weary of figuring out things!

Anyway, prayers that God’s will be done (and that we get in the Ronald McDonald House if that’s in accordance with His will) would be GREATLY appreciated.

Belinda is obviously dehydrated. Today at dance class she had to sit and watch the others. She texted me that she was exhausted, dizzy, and her vision was blurry. I had her tell her teacher and someone brought her a cup of hot water to drink. I heated a cup of broth and brought it up to her. She couldn’t get it down. She told me she maybe got a cup of water down all day, before the hot water.

I sent an email to her pediatrician asking for advice on what to do. We only have to make it 18 more days, but we’ve got to figure out something better.

I hadn’t been policing her too much because she seemed to be doing sort of okay. So now I’m going to try to get her back on the schedule she was on with the feeding tube, only with drinking the prescribed feeding tube nutritional liquid food she has left over from those days. It says vanilla and she says it tastes like the milk left over after you eat Lucky Charms, which is unfortunate, but it has 350 calories per box. So I’m thinking we will start tomorrow with hot water and then follow it with room temperature nutritional liquid food. I told her we will do that by 9 am and then she needs to have another by noon. Then she can try some actual food if she wants. But at least I can get some calories and liquid in her before she gets something stuck in there.

That’s what I think happens. I think that opening is just so very small, and she eats something, and bits get stuck in there, and then nothing else can get through. Now, this isn’t a perfect theory because sometimes she drinks water in the morning and can’t get it down, but honestly, I’m just trying to do something.

I also looked up IV hydration infusions and that is crazy expensive, like $400 for one treatment. I found one place locally that says they take our insurance but I’m sure that’s not an easy process. However, maybe there’s a way we can do something like that? That’s why I emailed her pediatrician, to see if there is a way Belinda can get IV therapy of some kind to keep her healthier until the surgery.

Here’s Belinda with the therapy dog when we were at Children’s in OKC in August 2023! I just saw this today and wanted to share it. We should be in Washington DC in 18 days!

Today Nikki from Children’s National called me and then got Southwest Airlines on the line to set up Belinda and my flight. It was very easy since Nikki handled everything. I just had to say things like where we were coming from and what days and times we needed. It is really nice that Southwest works with Children’s like that so people can have help with getting their kids these important surgeries!

Our flight is at 4:10 pm on April 21 with a layover in Nashville. We could have gotten a direct flight, but we are needing to leave as late a possible since Belinda has a dance competition that day. We still have to see how she will do with the competition since she will be on day 3 of a clear liquid diet at that point. She can have apple and white grape juice, and broth, so I’m hoping if she can get those down it will help her get quick energy before her dances. She wants to participate so much and I don’t want to take that from her. It’s the last competition of the year.

We are scheduled to return to Oklahoma City on April 25, and that’s a direct flight. If all goes as planned, we should be back here just before 7 pm. Perfect timing to just go home and REST!

After that, Belinda doesn’t have anything big until the Spring Formal on May 2. She will probably have to have soft foods at that point (mashed potatoes type of thing) but that should be okay.

Please pray for my anxieties about the flight. It’s funny that I have taken so much in stride, but I worry about flying. I haven’t done it very much, and this will be Belinda’s first flight. Also pray for the doctors and nurses that will be performing the procedure, and that Belinda does well in surgery. A small percentage of children who undergo this procedure have narrowing of the esophagus after, that requires more procedures. Please pray that Belinda stays healthy, and above all, that God’s will be done in all things!

It looks like surgery will be April 22. I am supposed to get a call to confirm that. This is such a busy time of year for Belinda. She will have a dance competition that ends on April 21, and then we will have to get on a plane and be in Washington DC that night. We will need to stay there until the 24th or 25th. The dance competition should be able to get her dances scheduled early in the day. I hope that doesn’t make too much trouble for her team. As long as that works out this will be a good time for it. She won’t be able to eat much at her spring formal in early May, but at least it will be over and done with and she can get some healing in before she goes to Girls State.

Once I’m 100 percent sure on the date, I’ll need to schedule flights and things. The hospital said we might be eligible for a waiver for some of the flight costs. Here’s hoping.

Dr. Polan’s office just called because the genetics test is back early! We set an appointment for April 18 for us to get the results. I asked if there wasn’t anything sooner and there isn’t, which is difficult to accept but I guess that’s the way it goes.

At least it looks like we will know the results before surgery. Even if it doesn’t make a difference in the surgery, I’ll be glad to have the information.

Here’s a short article about the doctors who will be performing Belinda’s surgery, and info about the POEM procedure as well.

https://innovationdistrict.childrensnational.org/poem-procedure-is-safe-and-effective-for-children-with-esophageal-achalasia/

This morning Belinda and I had a zoom visit with Dr. Timothy Kane, the Division Chief of General and Thoracic Surgery and Program Director of the Pediatric Surgery Fellowship Program in the Joseph E. Robert, Jr. Center for Surgical Care at Children’s National Hospital in Washington, DC.

Dr. Kane was really nice and helpful, and answered the question I’ve been struggling to get answered for so long!

I told him how I had read that many children with Ehlers-Danlos (if that is what Belinda has) have slow emptying of the esophagus and asked if Belinda could actually be experiencing that, but it was mimicking achalasia on the tests, and if it was that, if the POEM surgery was still the best option.

And he didn’t raise his voice, he didn’t talk over me without answering my question, he didn’t do any of that! He said it was a good question. And then he answered it. Amazing.

The doctors at Children’s National have treated patients with Ehlers Danlos, and those patients that aren’t experiencing achalasia pass both the manometry and Endoflip tests. Belinda did not pass either for several reasons, including the fact that the tests show her sphincter is tight. Her esophagus is also dilated because it is getting stretched by food that cannot get down, but in Ehlers Danlos patients, the sphincter is not tight and the esophagus is not dilated.

He said that although achalasia and Ehlers Danlos are not related, he has treated a few patients that have both. Those patients may take longer to heal after surgery, but he said that was really just for open surgery, not for endoscopic surgery like POEM.

Belinda also had a question, asking if she would be able to do backbends and things like that as a competitive dancer. She had concern that her stomach contents might back into her esophagus after surgery if she attempted those tricks. Dr. Kane said it shouldn’t be a problem at all. He has treated other athletes (he mentioned hockey players, wrestlers, and football players) and they have not had issues like that.

I asked if he thought there was any other reason to delay the surgery to wait for the genetics testing results, and he said he did not. So we’re moving ahead!

They are scheduling surgeries around April 17 right now. Belinda’s dance competitions for the year will finish on April 21, so that week will probably be when we schedule!

Very scary but Belinda is excited to be able to eat and drink normally again. And her first time in a plane! Also scary for me but exciting for her, ha ha!

I got a response back from Children’s National yesterday and we scheduled a virtual visit with Dr. Kane on Thursday morning to see if we can come up with a new treatment plan for Belinda without the genetic testing results.

She did better yesterday and was able to keep more food down. Today she seems more cheerful.

The genetics testing company called me this morning for genetics counseling. It was mostly what to expect and they asked for permission to do testing for a wide variety of things as well, which I approved. More information seems good to me. I asked if the results could be expedited. She said right now Belinda’s results look to be back at mid to late April, but if her geneticist called them and asked them to expedite so the surgery could be scheduled, they would probably do that. So I sent Dr. Polan an email asking her to do that.

Hopefully things will move faster. But if we have to go ahead and have surgery without the results, I guess we’ll have to do that. I just wish everything would fall into place!

I did not call Children’s about getting the ng tube back in. On bad days, we want that. On good days, we don’t. It’s hard not knowing what to do.

I’m so thankful that she was able to get more down yesterday! Thank you to everyone for the prayers. <3