Wednesday, May 7, 2014

The Perils of Acid Reflux

My daughter has a growing list of diagnoses: Down syndrome, asthma, strabismus (2 eye surgeries), AV canal (2 open heart surgeries), Wolff-Parkinson White syndrome (2 ablations), obstructive sleep apnea, lung cyst, and as of last week.... GERD (Gastroesophageal reflux disease)

When Jaycee was a baby, she was diagnosed with acid reflux. Some moms consider feeding their infant a special bonding time. That wasn't the case with Jaycee & I. Feedings when she was a baby were stressful. I worked so hard to get her to take just a few ounces, and then I would hope and pray she'd keep them down. Most of the time, she would blurp it back up and out. We use to hate feeding her in public places because it was more likely than not that she was going to vomit during or after a feeding. Ah..those were the days!!

Then it eventually got better when she took more baby food. She came off her reflux medicine at some time or another. Acid reflux was done and over with. Or so I thought.

Recently, Jaycee was put through a number of tests as part of a hospital's specialty team that helps children who are "chronically ill." I was surprised to hear that Jaycee qualified for such testing because chronically ill just seemed so serious. I guess when you are in the hospital in June, July, August, Sept-October, & November and are treated at home for the next 2 months for illnesses, then that qualifies you. Maybe she is chronically ill?

One of the tests Jaycee went through was an impedance probe study. Essentially, this is the gold standard for determining if there is acid reflux. Prior to the testing, I was asked several questions to determine if she had symptoms of reflux:
-Does her voice ever seem hoarse?  Wet?  Gurgly?
-Does she complain of her chest hurting?
-Does she complain of things getting stuck in her chest?
-Does she burp a lot?
-Does she spit up or vomit after meals?
No, no, no. The answers to these and the rest of the questions were no. No symptoms. But then again, my daughter doesn't really talk, so I'm going on what I hear and see.

The big day of the multi-disciplinary tests came. The impendance probe was placed and the 24 hour recording began.

This is the probe taped to her face. Believe it or not, she never knew it was there. She never touched it. We never mentioned it. It was beyond amazing. She just left it alone. The hospital had sent us back to the hotel with some "no-nos," which are coverings to put on the child's hands to keep them from pulling the probe out. But, we never needed them. I've read that most kids pull these out in their sleep, but Jaycee's bi-pap mask prevented that. 

The tube that runs out the nose is connected to this recorder. It gives a constant measure of the ph. When I gave a medicine, I hit the first button that looks like a pill. When she ate or drank, I pushed the fork button & made notes for the doctor. When she laid down, I pushed the bed button. The heart with a lightening bolt button was pushed when she had a symptom like coughing.
 As Jaycee wore the recorder, I tried to not obsess over the ph numbers. I looked at them occasionally but I figured someone smarter than me with M.D. behind his name would tell me later what everything meant. However, I did check the ph level just before I woke her up the next morning. When I saw the ph was 1.0, I thought it was a bad sign.
Two weeks later, the results are in....Gastroesophageal Reflux Disease (GERD). She has "mild" reflux happening during the day and at night. I wonder how long my child has felt bad without me knowing. I wonder how she feels after she eats a nice yummy taco dinner with spoonfuls of salsa. The poor kid! Is this the reason why she hardly ever eats breakfast? Could this be contributing to her frequent wheezing or pneumonias? It turns out, this test was a good idea.
So, Jaycee is starting a medication to help with this. She'll have another impendance probe study to determine if the medication is working in a few weeks. We've been given different lifestyle changes and foods to try to avoid to decrease her symptoms. Of course her favorite foods are bad for reflux: tacos, salsa, spaghetti sauce, chocolate.
So, it appears it is time for me to get some new recipes, some nice bland recipes. 
Good-bye salsa! We'll miss you!! That's the price we pay for health.

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