Thursday, August 12, 2010

So Glad it's Over!

We took 2 days off of preschool and 2 days off of work for a procedure for Taylor that will hopefully give us some answers and help her feel better.

I haven't blogged much about Taylor's medical issues. I count my blessings everyday that we deal with medical problems that are treatable. I know there are too many families out there who manage medical problems that are more heartbreaking than what we manage everyday. There are families out there who spend days on end (and weeks and months and even years) in hospitals and in and out of doctors offices. My heart goes out to all of those families. While we haven't had to deal with any catastrophic medical issues in Taylor's 4 yrs of life, she has some chronic health issues that cause her discomfort and cause us a lot of co-pays in doctor's visits :). Of course she has food allergies, which I've discussed several times before. But honestly, that's the least of what we deal with at this point. Kids With Food Allergies has been such a huge source of support to me and our family that I feel like we've got a really good handle on how to manage Taylor's food allergies and keep her safe.

Taylor also has asthma which we've been managing for about the last year (although, in hindsight, I really think she's had asthma for longer than that but it went undiagnosed). She also has mild eczema. But the daily issues that we struggle with are related to reflux. I debated about sharing all of this because it's heartbreaking to see kids connected to tubes and I have a weak stomach. Yes, even as a hospice social worker a lot of medical stuff makes me cringe and turn away. So, I certainly won't mind if you skip over this post and don't look at the pics (which really aren't graphic), but I decided to write this post in hopes of maybe helping someone else out who may be on a similar journey.

This is a picture of Taylor before her procedure yesterday. She LOVES doctors and nurses and hospitals. I really have NO idea where she gets that from because hospitals used to cause me to have panic attacks. Literally. And, after a recent trip to our pediatrician, Taylor declared she wants to be a doctor when she grows up. (I guess we better start that college fund).

Taylor was born at 37wks after a very quick and intense labor for Mommy. From the very start, she spit up often. I had been surounded by babies and children for as long as I remember so I know babies spit up. But, by 3wks I was saying "This isn't normal!". She would projectile vomit (like a foot away), 15-20x/day. At the time, I didn't know my breastfed baby was allergic to dairy (which I was consuming daily), but I knew something was wrong. It took 3 months for our pediatrician to take us seriously. She ordered an upper GI, which involved feeding Taylor a bottle of barium, while we watched her gastrointestinal tract on a monitor. It showed her refluxing several times as she squirmed and screamed (exactly like she did when we nursed). I finally had a better understanding of why my baby was so miserable.

To make a very long story short, Taylor was diagnosed with GERD: Gastro-esophageal reflux disease after that test. As an adult, you know it as heartburn. Heartburn becomes a "disease" when it's frequent and chronic, and uncomfortable (I'm sure there's more specific diagnostic criteria, but that's the layman's terms version ;) ). Taylor has daily issues with reflux. One in 3 babies is diagnosed with GERD. And the vast majority of them outgrow it by 12 months, as their GI tract matures. Taylor is now 4 and still complains of a lot of tummy pain and has daily reflux symptoms. Since she was diagnosed with asthma, her reflux symptoms have become a little more confusing. She coughs during and after meals and drinks. She's also had pneumonia twice in the last year. She also gets monthly upper-respiratory infections and has missed a lot of days of preschool because for her, a cold is almost never "just a cold". A cold, for her, means a fever, a trip to the pediatrician, sometimes a chest x-ray to rule out pneumonia, antibiotics and several missed days of preschool.

So, all of this brings us to how we've spent Monday and Tuesday. Our GI decided some more tests were necessary at our follow up appt about a month ago. He wants to ensure she gets on appropriate medications, that there isn't more going on with her than we think and he's thinking maybe she actually has "non-acidic" reflux. So, he did an endoscopy and an impedence probe (the tube that you see in the first picture) to measure the acidic and non-acidic reflux that she may be having. The scope involves a tiny tube with a camera attached to it going into her esphogeous and looking into her stomach.

The impedence probe is a tiny probe that goes through her nose (as pictured above), into her esophagus and it sits just above the opening of her stomach. It measure the acid in her reflux, how far it goes up into her esophagous and how often she refluxes. The probe is attached to a recording device. So, our GI gave Taylor a sedative (what they call conscious sedation) to make her sleep during the procedure. He then did the scope and inserted the probe that would remain inside her for the next 24 hrs. The procedure itself is only about 15 minutes.

This is a picture of her shortly after the procedure. When she first came back to us she was awake and delirious, and not very happy. She was also quite chatty. She really needed to sleep so the drugs could wear off. Her face is red and puffy in the picture because she seemed to be having an allergic reaction to the drugs she was given. Fortunately, we were very quick in catching it and it resolved with Benadryl that the doctor ordered. The picture below was taken about 20 minutes after the Benadryl was administered via IV. They wrapped a bandage around her IV port prior to the procedure because she didn't want to have to see it. :)

When I explained to her that she was going to the hospital and what would be done, I told her she could bring a blanket and a stuffed animal or doll. When I asked what blanket she wanted to bring, she said "My sweater blanket". Our wonderful nurse was quite impressed when she commented on how cozy the blanket was and Taylor responded "My mommy made it for me!".

The Benadryl helped Taylor settle back down after the procedure and she slept for another hour and a half. We were sent home with the probe in, the recording device, and a form to write down every time she ate, slept, and had reflux symptoms. They'll then, review the recording on the monitor and compare it to what we had written down to determine the severity of her reflux and what the best treatment is.

While we were at home, Taylor wore her backpack with her monitor inside. We were really worried she would pull the tube out but she did really well with it. She said it was bugging her nose a few times, and when I questioned her about it she said she could feel it in her nose and in her throat. Here's a pic of the monitor/recording device.

We went back to the hospital on Tuesday to have the probe removed (very simple, literally just pulled it out. Painless, except for pulling the tape off), and Taylor was quite excited to see her nurse again, who tended to us yesterday. She colored a picture especially for her and ran and gave her a huge hug when she saw her! I actually almost got teary eyed because I work with so many nurses, I have a very special place in my heart for them. Our nurse thought Taylor was pretty special, too. When she greeted us yesterday, Taylor was her typical energetic self and the nurse said "Wow, this is great I love enthusiastic patients!" My response? "Well, then you're the perfect nurse for us because she's definitely enthusiastic!"

We should get the results of the probe in about a week. The scope looked good on first glance, just mild esophagitis that was there the last time we had this done 2 yrs ago. The GI took biopsies to test the tissue and rule out other conditions for her symptoms. We also need to schedule a swallow study to help determine why she's coughing and gagging when she eats.

Thanks for reading this far. :) If any of you have questions about reflux, please ask me and I'll answer you the best that I can. If you want more information on reflux and are also managing food allergies, there is a wonderful forum/message board to discuss food allergies, reflux, asthma and eczema at You can also visit and


RootsAndWingsCo said...

I'm sorry you and your family are going through this. I can relate to some extent. I have a Nephew who has EE (Eosinophil Esophagitis...I'm sure I spelled that wrong). Your pictures look all too familiar to what he has been through! With some of your symptoms it does sound a tad different, but many similarities. My heart goes out to your daughter, as it does my Nephew! Here is where my sister wrote about what my Nephew has.
Good luck in your journey!


Crafty Mom said...

Hi, Rebecca! Yes, I'm quite familiar with EE (unfortunately). There is an Eosinophilic Disorders forum on KidsWithFoodAllergies.Org. We had the probe and scope done 2 yrs ago to rule out EE. Our doctor wanted to run the tests again to ensure nothing had changed (given her original tests were negative for EE). As the Community Manager at KFA I read the struggles (and triumphs) of families dealing with food allergies, and EE. I linked to her post at the time she wrote it and I've actually linked to Anjeanette's post when people ask about patch testing. I figure if our children have to go through these challenges, we can at least learn from them and help others who are going through similar things. Thank you for all that you guys do to raise awareness about EE and Autism. :)

RootsAndWingsCo said...

It seems so many children have food allergies now! I am so thankful for people being more connected (like with groups and the internet) so that we can learn from each other...and lean on each other! Even just knowing someone else is dealing with something similar, makes you feel less alone!
Again, good luck in your journey with your little one. We are always thankful my Nephews don't have anything life threatening, but EE and Autism can still be daunting and overwhelming and all the rest! ;)