Dysphagia Clinic

Lydia update!

To catch up on how we got here, read this post.

Last week, we had our appointment with the Dysphagia Clinic at Primary Children’s Hospital. Our other kiddos were able to stay with my parents while I went with Lydia (only one person is allowed with the patient, so Mark stayed and worked while the kiddos and I went over to Salt Lake).

We drove down the evening before Lydia’s appointment because I wanted the morning of her appointment to be as stress-free as possible. However, Lydia had spent a good chunk of the night awake and I ended up dozing while holding her in bed. So we were already starting the day pretty exhausted.

We were all ready to go, and I was talking to my mom while Lydia sat on the floor in front of us, when Lydia threw up. She got all of her clothes dirty and, of course, I hadn’t packed her any extra clothes. What was I thinking? I have no idea. All she had was the pajamas she had worn the night before. We were supposed to leave in fifteen minutes. I quickly took the clothes off and rinsed them out and threw them in the dryer. But they were not dry in time. So after waiting an extra ten minutes past when I wanted to leave, I finally just put Lydie in her pajamas and headed to our appointment.

It was not a good start.

I was really worried about being late and it was definitely not as relaxed as I wanted it to be. Luckily, I had filled out all of the paperwork before though and we raced inside.

This clinic is all about feeding and swallowing. Lydia has really struggled in this department. And this appointment was meant to meet with several professionals to come together with a plan.

Here are the main concerns with regards to Lydia’s eating:

• Inability to eat food that is not pureed – WHY?!
• Decline in growth
• Concern about whether or not she is getting proper nutrition from her limited diet
• Throwing up – again, WHY?!
• Constipation – Lydie has some pretty major constipation issues and it can cause her MAJOR discomfort

First up, was the speech pathologist and nutritionist. They came in together and asked a lot of questions and got her history and where we are currently at. I basically brought the entire contents of the grocery store baby aisle to show what we are feeding her, what has worked, and what hasn’t.

They then wanted to watch me feed her. Lydia was such a champ as she had a very active audience watching her eat. And she did a really good job.

After I fed Lydia her lunch, they left and the pediatric gastroenterologist came in. We went over her history some more. She then gave Lydia a bit of a physical exam.

She raised a little bit of a red flag about Lydia’s constipation issue, that certain parts of her anatomy are a little closer together than they should be and that could be causing things to be “squished”. So sadly, this could be a life-long issue.

She also commented on Lydia’s “coloring” being a little orange-y. To be honest, Mark and I had never really noticed. But now we do.

Our pediatric gastroenterologist (can we give her a nickname? Let’s call her PG) said that she might want to do an upper endoscopy. This would require Lydia to be put under though and she wanted to wait and see if we could combine this with any tests that the neurology clinic might want to do later this month.

First, she wanted me to get Lydia’s upper GI x-rayed. It was such a blessing because they were able to get Lydia in that same day. So we were scheduled for three hours later.

Our PG did make the comment that she was a little upset that Lydia hadn’t been seen until now. All I could say was that it took us this long to get people to believe us that Lydia needed help. It was frustrating. She said that she was really glad that Lydia had an appointment at the neurology clinic and would be awaiting the results of that.

After the PG left, the nurse practitioner came in and kind of did a review of everything. We went over the notes from all three professionals moving forward. We got some good advice on food moving forward from our dietician and the speech pathologist. Mostly, just to continue working with our local speech pathologist here.

They aren’t overly concerned with her only eating pureed foods. As long as she is keeping the down, she is okay to move forward with that. The plan is just to gradually introduce new things and, through trial and error, find what works best for her.

There was also talk about it being a possible allergy thing. Lydia has some eczema and that, plus her fair complexion, can make her more prone to allergies (apparently). Lydia has never broken out in hives or anything but that may be a course that we try down the road.

Basically, we have a LOT of trial and error ahead of us.

We also did leave with a referral to the UDAC Clinic (University Developmental Assessment Clinics). They were a little concerned about whether or not we would qualify since we lived out of state but luckily, that has all been worked out.

This clinic provides assessments and recommendations for children with developmental diagnoses. There is a LOT of professionals that work together as a team: pediatric and nurse practitioners, cardiology and neurology, speech and language pathology, psychology, and occupational and physical therapy. So this will be happening soon as well.

After this, Lydia and I left to kill some time before her x-ray.

Do you want to know what maybe the worst part of this day was? There was WAY too much time for me to think. It’s hard. It’s really hard.

Once, Lydia and I got back, we went over to the actual Hospital side of things, and got her checked in for her x-ray.

Let me just say, as beautiful and wonderful as Primary’s is, I really kind of hate it. I hate that it has to exist. My eyes tear up every time I come here. My heart just breaks for these children and their families. And even though I have no doubt that place is filled with angels seen and unseen, it just breaks my heart.

My worry about Lydia’s future just went into overdrive. I am really struggling with the waiting and unknowns. I try and play it off that I am okay, but the truth is, a lot of the time, I am not. And this truth hit me hard in that waiting room.

Lydia was going off of a really bad night’s sleep, followed by no nap because of our appointments, and she was doing so well.

I hadn’t really been told much about the x-ray and I didn’t know that she would need to drink something (barium). And, of course, I had taken out her sippy cup from the diaper bag when we came back for her x-ray. We tried different ways to get her to drink, and finally we just had to use a syringe.

Luckily, she did really well with that. We stripped her down to her diaper and they had to wrap up her legs (so she basically looked like a little mermaid). She was doing so well…until she wasn’t. She started crying a lot. The doctor that was overseeing her x-ray was not very sympathetic. He kept asking me if I could give her a treat or something (apparently he missed that whole part of her struggling with food). I asked if I could give her a binkie but it didn’t really seem to help her calm down. Then the doctor suggested I show her videos on my phones, luckily that seemed to help.

It seemed to take a long time and I could tell that the doctor was getting antsy. Afterwards, I asked him if he could tell me anything. He told me that everything was anatomically correct (where it should be). So that was good news! However, he said it did take her an unusually long amount of time for the barium to leave her stomach. I asked him what the average is and he told me it usually takes about three minutes, it took Lydia about twenty.

We left Primary’s and awaited a phone call the next day with our PG on the steps moving forward. She said that as of right now, she doesn’t think Lydia needs to have an upper endoscopy. The current hypothesis is that food is taking so long in the stomach that basically Lydia just gets tired and since she can’t move things down, she moves them up and throws up.

The best thing they have found to help is basically a low-dose antibiotic to help the stomach muscles squeeze. This can have a negative effect though, because it can also make you really nauseous from all of the squeezing stomach muscles.

So the plan moving forward is to give that medication a try. The only snag now is that this medication isn’t covered by our insurance and would cost us a whopping $900 a month out-of-pocket. That is not in our budget right now. So we are working to find a solution with that.

Once Lydia and I left, we drove back to my parent’s home and picked up the other kiddos, and left for home. Again, the three hour drive back home was not my friend. Way too much time to think.

When we got home and got all of the kiddos to bed, Mark and I talked. We are both of the belief that there is something bigger at play. And we are SO OKAY if we are wrong about that, but something is just telling us that this isn’t going to be an “easy” fix. There isn’t going to be some procedure that will make everything okay with Lydia. And we both believe it is more than just a “delay”.

It’s scary. And it has taken us some time to get to that point and actually vocalize it. We have no idea what the future holds for our sweet little girl. And that’s hard.

We’ve heard some scary things in recent weeks about how we just need to be “prepared” for possible situations.

There have been some blessings throughout this, and they are things I need to remember. First, is that I count it as a major blessing that I haven’t completely lost it. Maybe that sounds a little dramatic, but that’s kind of where I’m at some moments. This year has been so hard. It’s been hard for everyone. But sometimes when I think of all that our family has experienced this year, I have the thought that it’s just all too much. That my Heavenly Father is expecting too much out of us right now.

But what a blessing that that thought has been a fleeting one. It has not taken root in me, and I refuse to let it. I can be pretty stubborn and that is something I am determined to not let in. Satan has worked on me A LOT the last week since this appointment.

He has tried to manipulate those feelings of anxiety and worry and make me believe that I have been abandoned. I refuse to let him make me feel this way.

The only way forward is with our Father in Heaven. At times when it feels like no one could understand what we are feeling, I know He does. I know His Son has felt all of the worry and emotions that we have been feeling. And I put all of my trust in that.

I have been buoyed up by talks from our recent General Conference. I’ve been thinking a lot about Elder David A. Bednar’s talk about adversity and faith.

“Tests in the school of mortality are a vital element of our eternal progression. He who authored the plan of salvation described the very purpose of our mortal probation using the words prove, examine, and try in ancient and modern scripture…

Faithfulness is trusting and placing our confidence in Jesus Christ as our Savior, on His name, and in His promises. As we “press forward with a steadfastness in Christ, having a perfect brightness of hope, and a love of God and of all men,” we are blessed with an eternal perspective and vision that stretches far beyond our limited mortal capacity.”

So that is where my focus is. I feel like I am in a time of “proving”. And how can I expect to live with the greatest of men and women someday in heaven, if I do not go through my own valleys of hardship? So I am putting all my faith out there. And I pray for more each day.

I write this down, to hopefully help someone else who might be feeling stretched to their limits, but also for myself. I know Satan would like to make us believe that we are abandoned. But the reoccurring thought I have had is that would be the easy way. It would be so much easier to be bitter, to exhaust myself with asking “why”. It feels harder to have faith sometimes. But it is so much harder to not have it. I have accepted that some things I will never understand in this life. But I know one day, whether in this life or in the next, I will understand why things needed to be so.