We didn’t get much sleep last night! It’s 5:30 am now, eastern time, and we are in the waiting room at the surgical center at Children’s National. Belinda is reading a book and Bluey is on with a slight echo between the two TV sets. She’s checked in and we have our ID bracelets, and are waiting for our pager to buzz when it’s time for her to go back.

We had two good flights yesterday. I got a bit nauseated during the first landing, but the second was better. Belinda enjoyed looking out the window but also read during the flights. The second one ended up being delayed a short time, so we got into DC later than expected. We took a taxi (Belinda’s first) to the Ronald McDonald House. The taxi driver was wonderfully kind and waited for us to get inside (and it took a while) before he left.

The RMH turned out to take a bit because the manager hadn’t informed the lady on night duty that we were coming in late. So she couldn’t get our key fob to us. However, she found us in their computer system and so she was able to get us into our room, 205. We are supposed to get our key fob when we get back there. That shouldn’t be until tomorrow though, since we are in the hospital tonight.

We got in the room at about 11 pm, I think, and then Belinda took a shower and we packed our things for the hospital and went to bed. The room is small, with two twin beds, and incredibly clean. We are very happy there. They had some snacks and breakfast things set out this morning, and I didn’t take anything although I should have. I don’t like eating when Belinda cannot but my blood sugar won’t be happy for too long this morning. I may try to find the cafeteria or a vending machine here when the procedure has begun. I don’t know how long it will take.

My alarm went off this morning at 4:30 am and we got ready quickly and sent the request for the uber. The hospital provided uber services for us this morning. This was both Belinda’s and my first uber ride. It was really nice.

The hospital seemed almost empty when we got here but the surgical center waiting room is filling up soon. So many children having surgery today! It is very sobering and makes me very grateful that we haven’t had to do this before. Please pray for all these families.

ZERO days to go!

Belinda and I are at air airport, at gate 16 at Will Rogers in OKC. We fly to Nashville first and then go on to DC.

She did really well at the dance competition today. I could tell she was running out of energy but she gave it her all! At one point, the entire studio prayed for her. That meant a lot.

I just got a notice that the flight in Nashville has been delayed. I’ll have to see how that will affect our arrival in DC.

ONE day to go!

Today we got some more instructions from Children’s National, plus a TSA letter for us to print out that asks airport security to allow her to bring her drinks through security and onto the plane for medical reasons. I am very thankful that Children’s National sends these things and I don’t have to know to ask for everything. It is a great relief.

The trip to Broken Bow went well. We saw the total eclipse and it was great! I also was able to focus more on Belinda and getting her to drink her nutrition shakes and to hydrate. Today was probably the worst day for that because she only got a cup of tea down before we got in the car, and then drinking the nutrition shake in the car made her feel sick. So she went to get her pictures done at the dance studio an hour ago, but when she gets back I’m going to get her to get the shake down. We got at least two down each day on the trip, which makes me feel like we’re doing a lot better. It’s 700 calories she wasn’t getting earlier, and it’s complete nutrition, not just a juice box or jello or something.

I think besides that she had some grapes at breakfast and some strawberries at lunch. I don’t think she had much else. A juice box in the car. So she’s had maybe 300 calories today? Not enough.

It just tells me that I have to keep focusing on this. Thirteen days to go.

Our upcoming schedule:

April 12-14 – Belinda will be at Encore Dance Competition. I also have my SCBWI Writing Conference April 12-13, and I didn’t realize this was the same weekend because that seems to be how I always roll, and I’m going to have to look at her performance times and see how I can make this work.

April 15 – Belinda will begin a full liquid diet. She can still have nutrition shakes and fully pureed things.

April 17 – Belinda begins taking a prescription for liquid Nystatin four times a day. This will help prevent infection in the esophagus after the surgery.

April 18 – We will receive a phone call from the preoperative nursing team finalizing surgery arrangements and giving us instructions.

April 18 – We have a virtual visit with the geneticist to find out her connectivity tissue disorder results.

April 19 – Belinda will begin a clear liquid diet. Only see-through liquids, like broth, juice, Gatorade, etc.

April 19 – 21 – Belinda’s Stage One Dance Competition. We are having to have her dances go early on the 21st so we can catch our late afternoon flight.

April 21 – Belinda and I will fly to Washington, DC.

April 22 – POEM Procedure!

April 23 – Belinda should be discharged from the hospital.

April 25 – Belinda should be cleared to leave Washington and we will fly home.

Just for fun, Belinda’s Spring Formal is May 2 (she’ll probably still be on pureed food for this) and the dance recital is May 11! And Spotlight 2024 at the theater and Girls State near the end of May! It never ends!!

She humored me by letting me take this picture of her at a recent appointment.

We’re at Broken Bow to see the eclipse. I realized there would be a total eclipse in Oklahoma back in 2017, when we went to see the one in Missouri and got cloudy skies. I booked the cabin we’re in back in 2022!

The last total eclipse in Oklahoma was 1918. The next one is 2045, and it will go right through downtown Cherokee, Oklahoma!

Anyway, yesterday we went to see the pediatrician and she didn’t think much of the IV hydration idea. She said that would keep Belinda hydrated for about two hours and cost a lot of money. She tested Belinda while she was there and said she was right on the line between dehydrated and not. After hearing her symptoms, she said Belinda was definitely dehydrated on Thursday. But the work we’ve been doing to get liquids down was helping. The doctor feels it’s mostly the lack of calories, not liquid, that was causing most of the issues.

So yesterday Belinda started with a cup of hot tea. Then she had one of her nutrition shakes. After that she had a juice box and then another nutrition shake. The pediatrician gave us some strawberry lemonade Pedialyte sticks, and Belinda had one of those in a bottle of water. Then I let her try to eat! We got thin crust pepperoni pizza from Pizza Hut and cheese breadsticks. I got her a cup of hot water to go with it. She got it stuck twice and had to cough it up, but she said she did get some down. That night she got another nutrition shake down, but it was slow going. So with three of the shakes, the pedialyte, and juice box, she had 1200 calories, and that didn’t even count the pizza!

She felt better today, but it was harder getting the shakes down her with us being on the road. She had one this morning but it made her feel carsick. She also had one of the pedialyte water bottles. She had a sandwich and chips and cookies for lunch and ate dinner with us, but I don’t know how good that went. I need to check with her and see how that went and try to get her to drink another shake.

I’m proud of her for doing her best with this. She hates the shakes.

We’re now at Reagan Airport. The flight is in about an hour, and it’s a straight flight to Oklahoma City. Belinda is doing schoolwork, of course. I’m hoping against hope that the plane isn’t completely full and we have a little breathing room. The two flights were both completely full, and I was in the middle both times, so I had to be pleasant and friendly, which wore me out after a while. It was all right though, the first lady was real nice and told me all about her MLM and the second lady watched The Office with captions and kept to herself.

This morning we did something a little different. I wanted Belinda to be able to see some of the iconic sights in DC, but our experience yesterday told me she just wasn’t up to a lot.

So I hired a pedicab, and we were chauffeured around DC. We got out and walked a little, but mostly rode. This was great because she was able to take it easy, and I was able to bring her heavy bag of liquids and heat packs without having to drag it all over the place.

We saw the White House, the WWII Memorial, the Vietnam Wall, the Korean War Memorial, and the Lincoln Memorial. We got out at most places and I took a picture with Belinda at the Vietnam Memorial next to Dale Bradley’s name. Dale Bradley graduated from Carmen High School just a little after Mom.

After our tour, we went back to the RMH and got our room cleaned up and checked out. We took an uber to the airport and here we are! Eighteen minutes to boarding.

We are ready to be at home!