The doctors came by this morning and said she can have clear liquids! The nurse said the order has to go into the computer and then she will bring her something. It should be about 10 minutes. Belinda is ready!
In other news, there is an alarm going off on her machines and we don’t know why, but it seems rude to contact the nurse when she’s coming back already. It may be a long 10 minutes!
Belinda is doing well. She is sitting up in bed and working on a college assignment with her laptop. She is experiencing some pain and said it’s now a 4 or a 5. They just put toradol in her iv, and they said they can also do morphine if that doesn’t help it. She also gets a dose of tylenol regularly. She says the pain is in her chest and stomach and feels like pressure. Our heaviest cat at home is Nutmeg, and earlier she said it felt like she had five Nutmegs on her chest. If you know Nutmeg, you know that would be quite a bit of pressure!
She doesn’t get to drink until tomorrow, and she is looking forward to that. Her doctor did give permission for her to chew gum, and she has done that happily! She has also been watching a lot of food videos on tiktok, which I think must be making things worse but she says makes it better. She’s ready for chicken alfredo and chick fil a mostly, and says that when we get home and she can eat solids, she is going to bake a cake and eat it. First she planned to make a chocolate cake, and now she has decided it will be red velvet.
I napped a little for the last few hours, but it was the type where I was still aware every time someone came in the room, which was good so I was able to help Belinda.
Belinda is awake and we have left Recovery Bay 30 and moved upstairs to the fifth floor. It is quiet here and I am glad.
She woke up when she moved upstairs, and then she wanted to change clothes and when they tried to reattach the IV it wouldn’t work anymore, so they’re going to have to start a new one. So now her chest is starting to hurt more because she isn’t getting the pain meds. Hopefully they come up soon before the pain gets too bad.
Everyone is so nice here. I really can’t stress that enough. Like…noticeably nice.
I haven’t seen her yet but I got to talk with Dr. Kane and Dr. Petrosyan and they were very happy with the results of the POEM procedure! They showed me a before and after image of her lower esophagus. The numbers are in millimeters, so her esophagus was only 5.7 mm at the narrowest part! Dr. Kane said that her lower esophagus is now the width it should be.
I’m looking forward to getting to go back to recovery to see her!
She has gone back for surgery. I forgot I would have to lug her giant book bag around (she wants to be able to work on schoolwork once we get checked into her room today). So I’ve got her bag for that, plus our things we’ll need for overnight. I am the pack mule of the hospital!
We met with Dr. Kane and the anesthesiologists, along with the surgical nurse. Dr. Petrosyan is also on the surgical team but did not come by this morning beforehand.
It took three tries to get the IV started, and the lead anesthesiologist ended up being the one to do it. The secondary one tried on the back of each of her hands, but both failed. They didn’t have a buzzy to help with the pain but they did have numbing spray. Belinda was a champ and on the third one I had to stop holding her hand and sit down because I felt like I was going to pass out. I’ve experienced that when I have my own blood taken and they fail, so at least I knew what to do to handle it. The third one was in her arm and that succeeded. I am thankful the lead doctor looked at her hands and realized he wasn’t going to get anything there, and went for the spot that has worked for her before. I guess it is more difficult for them to get to during surgery, so that’s why they started with her hand.
She wasn’t worried at all, just excited and happy that she will be able to eat and drink again!
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!
Belinda was tired last night. She went to see Bennett and Mia in A Midsummer Night’s Dream at the theater and all she wanted to do after was go home. She didn’t get enough calories yesterday, but it’s hard when you can’t swallow well and high-calorie drinks aren’t available.
Today is the final day to pack and prepare. I have a list of things I want to get done, but at least it’s shorter now.
Some ladies from our church are kindly bringing dinner to the house while we are gone. I am very grateful because I think they would just get food out each night otherwise, and our finances are pretty tight with all that’s going on, so I want to avoid that if possible.
I’ve said before that I’ve been a bit anxious about the flight and trip, but yesterday when I was driving, bringing home more Ensure Clear, I felt a real calmness and peace from God about the whole thing. Regardless of what happens, God wins! Even writing it now gives me great peace and joy. I am thankful.
Thank you for all your prayers.
TWO days to go!