Friday, December 2, 2011

The scoop on the scope

Well only 3 months have passed by since I last blogged. Um... yeah. I don't even know why I feel like blogging is such a chore. Well, maybe I do. And you might be able to relate to my lack of time or energy once I explain it all. I'll also insert a few random pictures of Lexi to make things more interesting.

Lexi dropped off of the 3rd percentile again back in September. It was pretty upsetting considering all the work we'd done to get her there. The GI decided to order another scope. She had one done around 9 months old and nothing was found at the time (under our previous GI, whom I hated), so he felt like something was being missed. He was oh so right. I'm thankful he pushed for this because if this scope had not happened we would still be in the dark.

Lexi was scoped in mid-October. She suffered a mild complication because the scope that should've fit down her esophagus was too big and caused trauma and bleeding. This was scary but even more, it was critical because this is how they realized she has an esophageal stricture.

I had no idea what this meant at the time. I had heard the word thrown around but wasn't totally sure what it meant. Basically, it means that there is a narrowing of her esophagus around her esophageal sphincter. Normally a child her age has an opening of about 18mm. Lexi's was 5mm. That was kind of an "aha" moment for us. No wonder she physically can't eat more than a puree consistency. IT DOESN'T FIT. 2 years of vomiting and gagging and weight loss and the pieces are starting to fall into place.
The first step was to find out what was causing the stricture. It could be congenital or it could've been formed due to scar tissue from reflux. The GI said it didn't look like there was scar tissue around the stricture so he is leaning more toward congenital. About 10% of congenital strictures will have some sort of cartilage around it causing the narrowing so Lexi needed to have an MRI to rule that out. If she had cartilage surrounding the stricture she would need to have surgery.

I was freaked out at this possibility. It would've taken weeks to recover and she would probably need to be fed via tube for a while. This sounded like a huge step backward considering how far we worked to avoid that. I know it would simply be for healing purposes but since she's been orally defensive in the past, it could be a huge set back.

Thankfully the MRI showed everything was clear and we could proceed with a much less invasive procedure called an esophageal dilatation. It's where the insert a small balloon into the esophagus to stretch it. Lexi has had 2 of these so far. Every time he esophagus stretches though, it always goes back a little. For instance the first time it was stretched they got it to 10mm. By the time we went back for the 2nd procedure it had gone back to 8.5mm. This last time they got it to 12mm, which means it will probably be between 10 and 11 next time we go in. Her 3rd dilatation is Wednesday the 7th. We anticipate she'll need at least one more after that.

Another thing they found is that her tonsils are enormous. On a rating scale of 1-4 (4 being the largest) hers are about a 4. They are practically touching. And what are the issues related to large tonsils? Oh... failure to thrive, poor weight gain, gagging, puking etc. Bingo! Another piece of the puzzle slides into place. Not only is my poor girl gagging in the back of her mouth from her giant size tonsils but she is also gagging from the food build up in her throat due to her stricture. I wouldn't want to eat either if I had her problems.

This month is a medically busy one. We have the remainder of her dilatations, and a tonsillectomy to look forward to. Every time her esophagus is dilated she is really pukey and gagging for about a week as she adjusts to the new sensation in her throat and learns how to swallow again. And the recovery for the tonsillectomy is going to be incredibly painful for everyone. I plan on keeping her in the hospital as long as they'll let me. I have a feeling that getting fluids and calories in her, let alone the pain meds will be quite the challenge. But when this is over? Should be a home run. At least that's what I've been told. We'll have to get to the other side to see if this IS in fact a home run. I'm hopeful but cautiously skeptical at the same time. For now, feeding therapy is on hold. There is no point trying to get her to eat a hot dog right now when her esophagus is barely the size of a pea. And tonsils that touch? I can only imagine how comfortable THAT must be.

So there ya go. Lots of stuff going on. In addition I had strep while Lexi had bronchitis. Then we all got the stomach flu the week of Thanksgiving. We're definitely hoping for a brighter new year. We're thankful for all the answers we've gotten and that we're on the path to recovery. We couldn't have gotten this far without our dedicated doctors and lots of prayer! Thank you all.


  1. Ellie, I have been thinking that you must have been busy since you haven't been posting. I was hoping that you were caught up in the fun of enjoying your time with Lexi in being a family. I am sorry to hear about all of what you guys have been through with Lexi's digestional health. (I'm sorry if I missed it on fb, but I haven't really been on there much.)

    After reading your post, it is understandable why you have not been posting. As you said, it is great that her new doctor was persistant and that hopefully the new plan will be successful. You are probably already familiar with Child Life, but they can also help prepare Lexi for surgery. She is getting a little older and may benefit from some medical play if she is receptive to it--basically getting a chance to explore and touch some of the medical things before a medical experience. If Lexi is at that point that she loves to play with babies and feed them and take care of them, it may be helpful to have a play doctor kit around after the surgery if she would want to play doctor and take care of her baby. It's a little more involved than that, but the important thing is to let the child safely express themselves with play. If they were to be forceful or aggressive with the medical toys and the doll, then a caring adult can carefully acknowledge the feelings while gently modeling how to comfort the baby and care for the baby with the medical toys. And since you know you will be staying at the hospital, feel free to pack somethings to bring from home such as a favorite blanket or stuffed animal, toys, books, music, and pj's/clothes (if the hospital allows it). Children can be comforted by the familiar, especially with the smells of home and mom. (I hope you find this stuff helpful and sorry if I am repeating anything that you may already know.)

    I will say that the photos of Lexi sprinkled throughout are adorable and kind of highlight that life continues to move forward, even in the most difficult of times and there is a lot of life in those moments inbetween while dealing with the stress. I will be keeping Lexi and you and Stephen in my continued thoughts and prayers.

  2. First of all, love the pictures! Lexi is gorgeous!

    Wow, you certainly have had a lot going on. I knew about some of it from FB, but there was even more going on than I realized. I'm so sorry for everything you've been through, but I'm really hopeful for you guys that you've finally found the answers you've been looking for for so long. Like you said, I can't blame Lexi for not wanting to eat with those issues-- who would?! I really feel like this is going to make such a HUGE difference for all of you. I hope you'll keep us updated. You guys will be in my prayers. xoxo

  3. wow!!! lots of prayers sent your way while your family goes through all of this! lexi is so cute!!

  4. Praise the Lord that they are figuring so much out! I have been praying for little Lexi, and I will continue to do so. Love and prayers, SSarr