Monday, May 14, 2012

An Unexpected Turn

All tuckered out from opening birthday gifts.
Raising a special needs child is often compared to a roller coaster ride. Along with the many ups and downs are unexpected twists and turns. We experienced an unexpected turn last week during Sadie's swallow study. This was Sadie's third exam to look at her swallow. Her first swallow study showed she aspirated thin liquids, and we've since been thickening her bottles using a gel called "Simply Thick."

During the swallow study, a substance called barium is added to her food. The barium lights up on the x-ray showing where the liquid is going during the swallow. (You can see a pretty cool video here.) Her therapist and doctor at the Rehabilitation Institute of Chicago ordered the swallow study to check her post-surgery swallow. We went in assuming a routine appointment - after all, she had a post-surgery bedside swallow examination in Cleveland which she passed with flying colors. She had not been getting sick and her lungs have always sounded clear (two red flags for aspirating).

However, the results showed otherwise. While drinking her bottle, even thickened, a small amount of the liquid was making it's way into her lungs during each swallow. Even at it's thickest consistency (honey thick), it was still going into her lungs.

Sadie eating her breakfast via NG tube.
Sadie was sent directly to Children's Memorial Hospital for an immediate admission and NG tube placement. (Standard protocol when a child fails a swallow study.) We were told by the pulminology team at Children's that if we had not found the aspiration, Sadie could have come down with a horrible life-threatening pneumonia. And, if she were to continue to drink, the aspiration could cause lung disease. The pulminology docs said that there are over 70 different mechanisms that must occur in the throat to ensure a safe swallow. Seems amazing that all of us aren't aspirating all the time, right?

This is what a G-Tube looks like. may ask, where does that leave Sadie? Well, there are few options for a child who aspirates. The most common being a G-Tube. Many girls with Aicardi Syndrome also have G-Tubes. In fact, one of Sadie's good Chicago Aicardi friends, Olivia, just got her G-Tube a few months ago.

In order to mentally prepare for this possible next step, we met with the surgeon this week who would perform the G-Tube operation. He provided us with pros and cons of G-Tubes. The pros being ease of medication administration, hydration, and most importantly - no aspiration. We have spoken to Sadie's team at Children's Memorial who have advised us to take our time with making this decision. They have offered to repeat a swallow study in 3-6 months to see if her swallow has improved. By that point, we can do more research and become more comfortable should the G-tube be the path she must go down.

Luckily, she is still able to eat pureed food (baby foods), so we've been feeding her her favorite keto-friendly food - mashed banana with butter. While we are disheartened and saddened by another "normal" being taken away from Sadie for the time being, we are grateful that it didn't develop into something even worse.


  1. Sorry to hear this. I remember every one of Julia's swallow studies (we had one every 2 years as her "gurgling" would get worse with eating. Every time she would have to go to the next thickness... from thin to nectar to honey to pudding thick. That meant NO MORE liquids by mouth and when we did the G-tube. It was hard every time, but better for her and actually easier for meds and hydration during ilness or when they just don't want to eat. I know it's hard to feel like you took something away that was "normal" she could do. It does get easier to deal with, for this.
    Let me know if there is anything I can help you with or if you just wanna talk.
    Connie & Julia :)

  2. Cathy, I am sorry Sadie is having these aspiration issues. (but whooo-bananas and butter sounds very decadent!)
    I hope you had a lovely Mother's Day with Adin and your sweet girl.

  3. Mashed bananas & butter....sounds like a great title for a children's song (maybe Beyonce could whip one up for Sadie?)!

    Thinking of you all!

  4. I just found this today looking for some information on swallow studies and aspiration. My son, Douglas, was born with Cerebral Palsy almost 25 years ago. In August of this year 2012, he went into the hospital with aspiration pneumonia and a collapsed left lung. Before this happened he had not been using a PEG tube. He was fed by mouth exclusively for 24+ years.
    We had two swallow studies done while he was in the hospital, and both were somewhat inconclusive (basically they couldn't specifially tell if there was aspiration) probably because he was healing from surgery to repair the lung and drugged up quite a bit, so not 'available' completely for the study.
    Douglas has been home for a few weeks now. He is very weak and his normally very small framed 79 pound body is now 64 pounds. He has been using a PEG tube for about 5 weeks. He was also given opportunity to have a speech therapist at our home 3 times a week.
    Eating slower, smaller bites and only about 2 ounces of pudding thick foods 3 times a day, all seemed to be working. We then had a swallow study again and he aspirated the Barium fluid, then the applesauce thickeness food and lastly the pudding consistancy food. Just as your daughter we were told that no matter what he was eating a small amount of fliud is making its way into the air way. Unlike your daughter, we were told to stop feeding him by mouth forever. I am devastated.
    Douglas is very physically disabled. His favorite things in life are music, tv and FOOD. What now? Can you tell me more about why the doctors are still allowing pureed foods when your daughter was shown to aspirate with every bite? I am confused and so scared and hurt. Thank you for listening. And any information you would like from me, do not hesitate to ask! God Bless your child and your family!

    1. Sadie was actually safe to eat pureed foods. It was just the liquids that she aspirated. please let me know if you have any other questions. You can e-mail me directly.