Saturday, December 10, 2011

Updates! Updates!

On Wednesday Lexi had her 3rd esophageal dilation. It was scheduled for 2pm, which I hate because that means she goes all day long without eating. On top of that, the procedure was after her nap time (1pm) so not only was she starving, but exhausted as well. Regardless of that, she did so well. The only really hard part is that they admitted us to the exact same room she's had 3 times and she immediately cried when we walked into it. They have a little play room down the hall which saves us every time and we spent the majority of our time in there while waiting for the procedure which started 30 minutes late.

Since this was our 3rd time I've learned small tricks that have helped maintain a certain level of comfort for Lexi. We brought the portable dvd player with several Elmo dvds (Elmo is the man...I can't imagine life without him). We waited until right before the procedure to change her into the gown. We had them put the hospital bracelet on her foot (she HATES having stuff on her arms). They did vital signs while she watched Elmo. I requested they put the IV in her foot instead of her hand so when she woke up she wouldn't freak out every time she looked at her arm or tried to rub her eyes. And paci, paci and more paci. We've weaned her from sleeping with it and I have no problem using it for soothing with all these medical procedures until we are done with them. I like to joke that I am addicted to HER paci because I use it when I need a fast way to calm her down.

The procedure went quickly and we were called back to recovery about 40 minutes later when she was waking up from the anesthesia. To my delight they had listened to me and inserted the IV into her foot. Let me tell you, this made ALL the difference. Because she didn't see anything on her hands or arms she was able to comfortably snuggle up against me and sleep off some of the anesthesia for about 30 minutes. Usually all the gauze, IV and hospital bracelet make it too uncomfortable to rest her head on and she just freaks out every single time she looks at her arm. Every. Single. Time. We didn't even need to use the dancing monkey they have at the hospital that usually distracts her from looking at her arm. I know how pathetic this sounds and I really wish I had a video that captured the drama that ensued each time she caught a glimpse of her wrist. Tragedy.

Her oxygen sats were a little low because she was sleeping and they didn't want to release us until she could maintain a 93% for 15 minutes. She was hovering in the high 80's for awhile. Once she woke up her sats went up and we were able to good home. But the best news is that this was most likely the last dilation. They were able to dilate to 15mm. Although that is still below normal, it's probably enough for her to eat normal food. We will re-evaluate if she is still having issues after her tonsillectomy.

Speaking of tonsillectomies, we decided to see the ENT that placed her ear tubes because he performs partial tonsillectomies that have a quicker recovery, and less pain, but are still just as effective if the reason for removal is simply size related. Needless to say that sounded awesome to us and we've changed our plans and are going with him. The procedure will most likely take place at the end of this month, or early next month. Most kids her age recover in about 3 days. 3 DAYS! While another less than 10% of kids take about a week. Just compare that to the recovery of a full tonsillectomy that can take up to 4 weeks to recover from. The risk of bleeding is also 4x less in a partial. Jackpot!

Now, onto more fun subjects... like my birthday. I am turning 30 on Monday. I'm feeling super spoiled because my parents will be out here for my birthday. They live several states away so I haven't shared my birthday with them for 6 years. Then the following week the hubs is taking me to an all inclusive couples resort in Cancun. Both grandparents with be watching Lexi so she's going to have a blast and we'll get to rest easy knowing she's having a blast. She probably won't even realize we're gone.

So those are some significant updates. I will post more once we're back from our trip and once The Chubs goes through her final procedure. Then we can hit feeding therapy hard and maybe, just maybe, I can finally think about ordering something for her off of the kids menu. Sounds like heaven to me.

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.