Category Archives: Achalasia

Ranger Preview

Posted on by
Reply

Today we left the house at *gasp* 6 am and drove to Alva so Belinda could do Ranger Preview, which is a thing for high school seniors to find out more about NWOSU. It was a great time and she got to talk to professors from the psychology and English departments, which is what she plans to major and minor in. She also visited with some people from clubs and took a dorm tour. I really enjoyed seeing the updates on campus and I got to see one of my favorite professors at the history booth! He told Belinda that she sure had two crazy people for parents. It is neat to go to a small school and get to be remembered like that. History wasn’t either of our majors, and I only think I had two classes with this professor, but he remembered us. It was so good to see him!

We ate lunch in the school cafeteria and then got Taco Village to take back for the fam. Belinda did not have a problem swallowing all day! She still has not had to regurgitate food since the dilation procedure. She said that yesterday, she did start to choke on rice (it’s so sticky) but she got up and started to walk and it went down. I hope and pray everything keeps going well!

And we we got home, Bennett was feeling better after Mia took care of him and everything else around here all day. That made me feel very happy.

The editor at the local newspaper wants to write a story about Belinda, and I need to get the questions answered that he emailed me. One of his questions was if we had a gofundme or how people could help. I’d never done that before, but I asked our pastor if people could give to the church for Belinda, and then the church would give it to us. We did that before for a young man in our church who needed special surgery. But then tonight, I went ahead and made the gofundme. I wasn’t sure what to put down, but I thought about how much we have spent so far, and how much that may be in the future. After she turns 18, she won’t be eligible for the same assistance from the National Organization of Rare Diseases. Her benefits are on the pediatric level. And there’s not much help for Achalasia because it’s super rare. And with health insurance kind of in flux right now, it seems smart to try to get on top of that. Also, we need to determine how we are going to meet her needs in her dorm room. We might do a wedge under the mattress to elevate her head, but many of the other parents on the facebook group have gotten adjustable beds for their kids. I feel like that might be a better option for the dorm room, so she doesn’t slide down. It would be more comfortable for studying and reading too, since she’s not supposed to fully lie down anymore.

Anyway, the gofundme is kind of experimental at this point. We’ll see what we think and make adjustments as we go.

Thirty days of gratefulness – An Opportunity

Posted on by
Reply

Today’s prompt is An Opportunity.

I am very grateful that I am now writing again for the Tuttle Times. My friend Jayson is the editor now, and he posted on facebook that he was looking for something to write for Minco and Union City, and get paid by the story, and I commented that if he was ever looking for someone for Tuttle, to hit me up (cause I don’t want to do Minco and Union City, sorry not sorry). He did, and I’ve been doing stories them for over a month now, which is wild because it’s gone by very quickly. It’s not a lot of money but it is nice to be getting a little something. And I am enjoying getting a toe back into the local news and community scene. It’s been a long time.

It couldn’t have come at a better time, too. I used my first check to help us out during the trip to DC for surgery earlier this month. And now the second and third checks is keeping our bank account from going negative, so I am very grateful for that!

When I commented on that post, Ben was still employed with no inkling that he was about to lose his job of 28 years. I just thought it would be good to write news again and to make a bit of money at the same time. But God knew what was to come. I believe that He put this situation in place, and it will help us through this difficult time.

My triumphant return into the world of journalism, in the Oct. 3, 2024 edition.

And now you know the rest of the story.

Insurance schminsurance

Posted on by
Reply

Today was the day I battled insurance!

I’ve been having some trouble getting one my own prescriptions filled with the specialty pharmacy I have to use. They told me our insurance showed as terminated on Oct. 31. I explained that we had extended it with cobra, and they were basically like, too bad, so sad. I have waged war with this specialty pharmacy before so I wasn’t super surprised. Then after two days of calling them, they discovered that I needed to get a refill order from my doctor anyway, so I did that.

Last night Ben and I rolled into CVS to pick up a prescription for Belinda. And they said, of course, that our insurance showed as terminated.

Ben got in touch with HR and it went back and forth a little. Today my doctor messaged me and said the prescription had been sent to the pharmacy. So I decided to call the insurance company myself and after an hour wait on hold, got connected to a very nice woman who set up a conference call with us and the specialty pharmacy. And the pharmacy rep told us that the office we made the cobra payment to needed to contact them and tell them that the information was incorrect and that we were covered.

I passed this on to Ben, who was tired of being the middle man and asked the HR rep if could just talk to me, and that’s what we did. I emailed her what the pharmacy had said, and she took care of it. The specialty pharmacy is updated and they also left a voicemail to CVS, so hopefully that one will be updated fast too. I am very thankful for his kind former co-worker!

Okay, so I just called the specialty pharmacy and they have not gotten the prescription from the doctor. Sigh.

I guess I’ll call CVS and see what the update is there.

It’s annoying that so much was paid for the extra month of insurance, and for two weeks we didn’t have pharmacy coverage. I am thankful that we didn’t actually need it, though. My prescription is late, but I did have a few extras from days I forgot to take it, so I think it will be all right.

And in the grand scheme of things, these problems don’t seem very big at all. I know that I am blessed. Thank you to everyone reading my updates and praying for Belinda, and may God bless all of you. <3

For sure spasms

Posted on by
Reply

I asked the parents in the kids with achalasia group on facebook, and it is definitely spasms. Several people said their children describe the sensation the same way.

I’m very grateful that Belinda doesn’t have them very often. I’m also grateful that they don’t last very long for her. She did say today that sometimes they last longer, like a few minutes, but still. One parent said their child has experienced them from an hour up to two days.

There is medication you can take that supposedly helps with it, but Belinda and I talked about it and she doesn’t think it’s at a point that should be medicated.

She’s also supposed to think about what she ate and drank before one, so she can figure out her triggers. She said she hasn’t had one since the dilation, so maybe that is helping.

I’m glad that she talked about it and now we know what it is. She was frightened that she was having heart problems, but now she doesn’t have to worry about that.

Oh, and bonus fun, the insurance through cobra seems to be working fine EXCEPT for prescriptions. Both pharmacies we use says that it says our insurance has been terminated since Oct. 31. Today I was on the phone with one of the pharmacies and also the insurance company. They were all nice but it’s apparently out of their hands. Insurance lady’s advice was to wait until tomorrow and see if the computers have caught up by then. Even though this is Day 14 of the coverage with cobra. The person at the pharmacy said that the office we paid for cobra coverage needs to contact them and tell them we are indeed insured. So now it’s back in Ben’s court, to deal with HR.

My speciality pharmacy prescription is now 7 days late. Belinda has one to pick up, and so does Lenora, and we can’t do it. It’s pretty bad that the cobra extension cost so much and it’s not even working correctly.

Possible spasms

Posted on by
Reply

Yesterday Belinda went to her pediatrician to discuss a strange problem.

When we were in DC, the anesthesiologists asked if she had any heart difficulty, and she mentioned that sometimes it felt like her bones were burning. I was startled to hear this and didn’t know what to make of it. She said it just comes on suddenly without warning, and feels like everything is on fire as she gestured to her chest. The anesthesiologists didn’t seem concerned. I thought maybe it had something to do with the Ehlers-Danlos and I looked that up later and it seemed possible.

Anyway, I got her the appointment and we went in yesterday. At that time, she told the doctor that it is in her jaw and chest (I thought she meant her whole body before this) and it feels like her ribcage is being spread out. She has it once or twice a month, it lasts for less than 30 seconds, and is excruciatingly painful.

The doctor began explaining the nervous system but my mind clicked immediately over to esophageal spasms, which most of the facebook group parents say their children have. The doctor agreed that it could be that. I did some research and it sounded likely, including the jaw pain, which I found surprising.

I’ve posted on our group to explain the sensation and ask what their children say their spasms feel like.

If it is spasms, I don’t think there is anything we can do but just knowing what it is, and that it’s not life-threatening, will hopefully make it easier on her.

Waiting for the pediatrician

EDS appointment set

Posted on by
Reply

I made an appointment for Belinda with an Ehlers-Danlos specialist, and set up one for myself as well. The only specialists all appear to be in the Tulsa area, unfortunately. The appointment is in December, so we’ll see where we are with the health insurance debacle.

I think that a lot of the pain I’ve had in my life is probably due to this, and I’m hopeful that even though Belinda doesn’t seem to have problems from it, we might be able to head things off at the pass.

Back home!

Posted on by
Reply

We are back home from Washington. Belinda is doing very well. We did go to Cheesecake Factory last night and we got burgers. She did not order a veggie burger but that’s the server apparently heard, but she enjoyed it anyway. We both ate about half and took the other half to go. She also got the cheesecake she wanted. We walked back to the hotel and read and watched election results for a while, and ate our leftovers. She did great eating both times.

The next morning we got up and packed. We took our things downstairs and checked out. The hotel stored our luggage in a locked room while we went out into the city again. We walked to the White House for our tour. It’s self-guided now and didn’t take very long. She didn’t want to read everything and I guess I really didn’t either. We went to the National Archives next, since the White House didn’t take much time. The walk was pretty long and it was also hotter outside than expected. We saw the Declaration of Independence, Bill of Rights, and the Constitution. We walked to Chinatown next, and ate at a place Aunt Nancy recommended, Wok and Roll. I liked my sesame chicken but her teriyaki chicken was fantastic. Soup was very good too. We wrapped up our leftovers and got an uber back to the hotel, where we got our luggage, and then continued to the airport.

We got to the airport three hours early but it was really quite a big three days, and we were ready to just sit for a while. We filled our water bottles and I read and used my computer. She used her phone and played on her switch. She ate her leftover food too, and everything still went great. She had priority boarding again and this time we sat in the front seat with the extra legroom. It was a drag not getting to stow our stuff under the seat, and having to put it in the overhead bin, but the legroom was super worth it. I had my leftovers on the way home.

Ben was waiting for us at the airport, and he carried some of our luggage. Belinda wanted something sweet so went drove through Starbucks and she had a refresher and a cake pop.

It has been so nice to see her not choking even once since the procedure. I am so thankful and I pray that it stays in good shape for a long, long time…like forever!

It is great to be back home.

Waiting

Posted on by
Reply

Belinda is back in the operating room now. They said I should get to see her again in about an hour.

We took an Uber here and the guy was very nice, but quiet. That was fine with me because I like to be quiet too. Belinda and I pointed out things we saw on the way. When we got here, I didn’t understand how the elevators worked and an employee helped us but he seemed a little annoyed with me, sadly.

***My pager went off while I was writing this and the procedure went well and it’s already over!! She’s in recovery now and my pager will buzz one more time when I get to go to her.

Well, I wanted to recap what happened this morning so I’ll pick it up there.

I made a wrong turn upstairs and led Belinda through the cafeteria before we found the right direction, which was a shame since she couldn’t have anything to eat.

**My pager went off again and now I’m back with her in Recovery Bay 35. Maybe I’m not meant to recap the whole day. I’ll try to make things quicker.

So the lady was real nice when we got checked in. We got the pager then. It went off when it was time for us to go to registration. We got our bracelets from a coolo guy and then he said that the computer showed there was a $500 facility fee. I said that we were told we had met our deductible and out-of-pocket max and he said he didn’t know why it was on there so not to worry about it. We will see what that leads to.

They had a hard time putting in the IV again. The lady that everyone said was the absolute best tried and failed twice, and it took a long time and there was a lot of blood. So then they decided they needed an ultrasound to get it.

Dr. Kane and Dr. Petrosyan came by to visit about the procedure. It was great seeing them in person again. I am so thankful for their work. Belinda talked about her college plans and Dr. Petrosyan told her she could accomplish anything. He came from Armenia in 1991 when he was 16 years old and didn’t know a word of English. And now he’s a surgeon.

After they left, a lady I have talked with through the facebook group came over with her daughter, who also has achalasia and is having an endoscopy today. They are from California. It was great getting to visit with them and Belinda and the other girl exchanged phone numbers. It is good for both of them to know someone who truly understands. While they were there, the ultrasound team came in and worked on Belinda and finally got the IV in.

The other family got called back to prep for surgery, and it was time for Belinda’s procedure. That team was nice and asked Belinda what music she wanted playing. She jokingly said Ariana Grande and that’s what they played as she was being wheeled out.

They have a screen on the wall in the waiting room so parents can follow for updates. Belinda was number 15603. I opened my phone and saw that Belinda’s ACT test results were ready, so I pulled out the laptop to check that and to update people on facebook and by text.

Here’s the results that Dr. Kane showed me after.

**Well, now she’s gotten herself discharged! She’s changing while I’m desperately trying to finish this. Quick once it started!

When I got back here she was awake and talking to the nurse. She had a small bottle of water, a cup of apple juice, and an orange popsicle. We hung out and talked and she looked at her phone and I typed. Now she’s sitting up and she said she’s lightheaded. She said she shook her head to get the hair out of her eyes and almost fell over.

No food restrictions now. We have found a Cheesecake Factory close to the hotel, and that’s what she wants. She says she needs a piece of s’mores cheesecake immediately. So I guess that’s our next plan. Get back to the hotel and either dump stuff off or rest and then do it. I’d rather go to the hotel restaurant but she’s apparently too good for that.

Anyway, she just opened the curtain cause she’s ready to get out of here. But the nurse caught her because she’s supposed to leave in a wheelchair. So we’ll wait for that and then I guess I’ll call the uber and we will roll out!

Back in DC

Posted on by
2

Belinda and I are at the hotel in DC for the night. We are staying at Washington Plaza Hotel, just six blocks from the White House. The cost of the room was paid for the National Organization of Rare Diseases, which is a great blessing!

Ben took to us to the airport this morning and we got through TSA, then Belinda asked for Starbucks. I warned her it would be expensive at the airport, but then I went ahead and let her. She got the smallest sized chai latte, so it wasn’t that bad.

We were sitting at the gate when there was an annoucement that someoone had left their bag somewhere and it was with security. Belinda and I exchanged a look at that poor person’s plight. Then we noticed she didn’t have her bag! Turns out I thought she had taken it with her to Starbucks, and I came and followed her after a few minutes and left it there. But everything was in it safe and and sound and the security people smiled and thanked us for getting it. I’m glad we didn’t lose it!

Southwest gave us priority boarding again because of Belinda’s medical condition. I wasn’t sure we should do that since she’s not in a wheelchair or anything, but it was the best way to ensure we would be seated together, and I need to be there instead of a stranger in case she has choking issues. There was also a service dog on the plane that was a very good dog.

The flight was direct this time, and we didn’t have anyone in our row with us. That was very nice. I wrote my articles for the Tuttle Times and read. She looked out the window, read, and napped. It was a good flight. The pilot apologized for the turbulence early in the flight, when we were getting around the storms, but I really didn’t notice anything out of the ordinary. The flight attendants were super nice too. Just a good experience all around.

Belinda had apple juice and pretzels on the plane and she ate slowly and didn’t choke. She also had a few strawberries that I’d brought from home.

We got an uber to the hotel and the driver was very nice too. He was listening to hip hop and a Will Smith song came on while we were getting to the hotel and I took that as a good sign, since he is one of my all-time artist faves. Belinda didn’t recognize the song and said she only recognizes music by Ariana Grande.

Hotel is swanky and a doorman brought our luggage in and opened the door for us. Concierge is super sweet and helpful. She is going to print our White House passes for me, since I didn’t realize they needed to be printed until today. I finished up my stories and sent them while Belinda ate more strawberries. She did choke once, but went to the bathroom and it was okay.

Belinda wanted fettucine for dinner, and we found a little place about eight blocks away and walked there while the sun was setting. The place was pretty empty but the people were great and the food was too. It reminded us of the Chinese restaurant in Tuttle somehow. Belinda ate slow and didn’t choke. We also got cannoli to take back to the room which I’m looking forward to. We saw interesting architecture as we walked back and a church next door to the hotel had a group of people singing outside. We also saw a dog that looked like Bond from SpyXFamily.

(The church is the National City Christian Church. Wikipedia says it was built in 1930 and is the national church and cathedral of the Christian Church (Disciples of Christ).

We passed the Metropolitan African Methodist Episcopal Church on our walk, and I told Belinda how the Obamas had attended some services there. We also walked by the Saint Germain Foundation, and I informed Belinda I understood that was a cult. She’s getting so much learning here.

It’s only 7 pm but it feels later. I’m not sure what we’re going to do tomorrow. I didn’t expect the procedure to be at 5 pm so I didn’t plan anything for the morning. She said she might like to see the Library of Congress. She can only have clear liquids after midnight. I bought a box of the kind of broth she likes. There’s a fridge in here but not a microwave, so I don’t know what to do about that. Maybe ask downstairs? I do have a thermos.

Now she’s on her computer, looking to see if she has anything else due for her college classes. She’s got the inflatable wedge blown up so she can sleep (she can’t safely lie down flat anymore after her original surgery). This is the first time attempting to sleep on the inflatable wedge. I’m not optimistic but we couldn’t really bring anything better without a lot of hassle.

There were two complimentary bottles of water in the room when we got here, and she already finished hers and now she’s taken mine. Oh well, I still have water from the airport in Oklahoma City so I’m doing okay.

We’re looking forward to tomorrow. This procedure is basically a balloon dilation to open up the lower esophagus due to too much scar tissue forming after the POEM procedure surgery. This one is outpatient, so that’s great! I hope this helps for a long, long time.

Final instructions

Posted on by
Reply

I got a call this evening from Children’s National. Her procedure is scheduled for 5 pm on Tuesday, and we have to be at the surgery department of the hospital, on the second floor, at 3 pm. She can eat and drink normally the day before, but will on a clear liquid diet after midnight, and nothing red or reddish. So she can have water, broth, gatorade (no reds), gelatin and popsicles (also no reds) and that’s about it. Belinda wasn’t thrilled to hear that. I wish the procedure was scheduled earlier in the day, so she wouldn’t have to wait all day to eat. But, it will gives us time to sightsee on Wednesday morning if we like, and I think she’ll enjoy that. I’ll have to make sure to pack a thermos for carrying around the broth that day. Our time is one hour earlier, so she will be having her procedure at 4 pm in central time.

She has a shirt that says Achalasia on it and it has a rating of one star. Under that it says something like “Very bad, do not recommend.” She says she’s going to wear it all day Tuesday, so she can roll into the hospital with it on.

There’s another family from the facebook group for parents of kids with achalasia that will be at the hospital that day as well. We’re going to attempt a meetup. It’s all loose right now, which is good. I’d like to meet them and let Belinda meet another person with achalasia but I also want to make sure I can focus on her.

Today we received the itemized statement from OU Children’s that shows everything we paid to them for this whole thing. The total they charged for Belinda’s care was $74K. Insurance handled most of that, but we paid our share too. And all of that was for just figuring out the diagnosis. I sent the first page of the statement to NORD. They said they might be able to reimburse us for part of what we paid. We’ll see what happens.

We need to pack. Instead I cleaned house the last two days. Things look a lot nicer here now, making me feel better about leaving it for a few days.