Tuesday, November 9, 2010

The Never-Ending Story or Marlo's Reflux

It's is amazing how resilient babies are!
For having a generally healthy child I feel like I am at more doctors appointments than anyone other mom I know. Over the past two months we have been back and forth to 2 different hospitals, had over 20 doctor's office visits, met with 4 different specialists, had 3 procedures done, had to hold down my writhing baby on one operating table, and hold her hand as she was put under on another and now she is taking medicine 4 times a day...all due to her reflux.

After 6 months of taking Zantac, we thought it had gone away, and she was actually off the meds for 2 months. But once she started eating a vast array of solid foods, it came back with a vengeance!

It started in September when she began having this stridor episodes - she would have a bottle, and then about 45 minutes later have some solids and when I laid her down to change her diaper she would choke and not be able to breath. Each time began the same way, with this terrible short gasping and her hand flapping, followed by her color darkening. I immediately would throw her over my shoulder and smack her back and she would scream and gasp for air. This child never screams and cries, so I knew she was in pain.

This happened a couple times, and we were immediately put back on the Zantac and referred to a pediatric Ear, Nose & Throat specialist (Specialist #1). This doctor was very concerned with what he saw on the up-the-nose-down-the-throat scope (that is my technical term for it) on a Thursday, so he scheduled us for a Bronchoscopy first thing Friday morning.

We had little time to prepare ourselves for what had to happen that Friday. It was a simple procedure - a tube will be placed down her throat, and they will do some exploratory things, and if they find something out of the ordinary, they will biopsy it. Oh and your 10 month old will have to be put under. Oh and there are all sorts of bad things that might happen...but most likely they won't...but they might so prepare yourself. Something you never want to have to think about when it comes to your child. The whole thing went by very quickly (and there wasn't anything that needed biopsying thankfully) but it was very trying for my husband and I. To see your little baby in a hospital gown, on a big metal table, in the middle of a huge operating room, with 10 doctors and nurses scrambling around, and then having to hold her tiny hand as they put a mask on her to knock her out - no parent should have to go through that.  She was totally back to normal an hour after it was all over...took Mama a little more time and a few glasses of wine!

 

Thankfully all they found was evidence of severe GERD (Gastroesophogeal Reflux Disease), and nodules on her vocal chords. They also noticed that she has an esophogeal cleft, which means the distance between her trachea and esophagus is shorter than normal, and this was most likely the cause of the choking episodes (reflux liquid would come back up and aspirate into her trachea - hopefully I am getting all this medical stuff correct :). This doesn't pose a big problem now, but it is something that we have to monitor and might have to have corrected surgically in the future.

Fast forward through a month with no choking, then the choking episodes happen 4 times in a span of 3 days. So, back to the ENT we went. He then sent us to a GI specialist (#2) and airway specialist (#3). The next day we were back in the hospital for 2 more procedures - an Upper GI and a Barium Swallow study.

The Upper GI was the worst for all of us I think. Marlo had to lay on this operating table with a giant x-ray machine 2 inches from her face as she drank this horrible tasting liquid. My husband and I had to stand at one end of the table and hold her flailing arms down, one nurse was at her feet holding them down, and a second nurse was attempting to get her to swallow this nasty stuff so that the gastro doc could watch it go down her esophagus on the screen. Man it was not a pretty picture - she was screaming so loudly that she couldn't actually swallow enough of the liquid so they had to shoot it in her mouth, which made her choke and spit up while laying down. It was a disaster.

Because she was so upset, she aspirated, causing fluid to go into her lungs so the Swallow doctor (specialist #4) had us proceed with the Barium Swallow (there was a possibility we wouldn't have to do this as the Swallow doc was watching the Upper GI too). This was so see if anything was wrong with her ability to swallow properly. It is conducted just like an Upper GI, with the swallowing of the same terrible liquid, but at least this one is done sitting up. Of course that made it no better in the long run.

So after all this we were told that we can chalk everything up to her having severe reflux. There is no guarantee these episodes won't continue, we just have to wait and see. Now we are on Prilosec, in addition to the Zantac we take twice a day. Unfortunately for Marlo, the Prilosec is this terrible thick salt watery substance that she has to take directly into her mouth - it can't be mixed with food or juice. It has to be taken 20 minutes before she eats or drinks anything - and it is a process every time we have to administer it. There is gagging and shivering and spitting up...twice a day, every day.

And so, the saga continues...

Anyone else dealing with reflux out there? Share your stories please!

4 comments:

  1. Nothing as horrible or scary as your story. We still take Axid 3 times a day and Toby seems happier. We just started our first cereal today which is 3 months earlier than I started with Helena but this is primarily due to the fact that Toby is still too skinny. Good luck Marlo and hang in there Jess!

    ReplyDelete
  2. Garrett, almost 8 months, has reflux pretty bad, but has never aspirated, Jess, how scary for you guys. G chokes a lot, but then just coughs or spits it up. It also comes out his nose, so that is never fun. He is on Zantac three times a day; two times a day just didn't cut it, he would always be really miserable in the middle of the day. And there is no ryhme or reason to when he does it; always after he eats, when he goes down for a nap even if it is a couple hours after he ate, when he wakes up... Baby food hasn't made it any better, now it just smells worse than breast milk or formula did by themselves. I feel like the whole house smells all the time. Our nanny had a doctor's appt. today and when she got back, she said that all she could smell in the waiting room was spit up and was worrying if all of the other patients were smelling it too! But the grossest thing is when he projectiles and I can't get to it fast enough and the dog licks it up... nice.
    Rebecca, hope the cereal helps Toby and Jess, we will definitely pray for Marlo!

    ReplyDelete