Hello to all Ava's followers! It's been a bit since I updated. She still has a cough. We went ahead and did the procedures her GI and Pulmonologist recommended. The day before Thanksgiving Ava had a Esophageal pH Test (An esophageal pH test measures and records the pH in your esophagus to determine if you have gastroesophageal reflux disease (GERD). The test can also be done to determine the effectiveness of medications or surgical treatment for GERD.), an upper endoscopy (a thin scope with a light and camera at its tip is used to look inside the upper digestive tract -- the esophagus, stomach, and first part of the small intestine, called the duodenum. ) and a bronchoscopy. (They were looking at the inside of the airways and lungs.)
For the PH test she had to be admitted for 24 hours. She was pretty excited about staying in bed all day eating anything she wanted and being able to watch movies and play on her Ipad. I for one was not thrilled as I had spent a lot of nights with her in the hospital and knew just what a hospital was all about. It had been about 6 years since her last overnight stay. We really need to get to the bottom of this constant cough.
This was Ava waiting for the procedures. See that beautiful smile?
We said a little prayer and off she went. She was ready. It caught me a little of guard when she returned. She was still sleeping and snoring pretty loud. I was so happy they didn't have to intubate her. It was a possibility we were aware of.... Emeline was with us, Those two are so close and she just had to be by her little sister's side.
Ava was so sassy when she woke up. She was irritated very easy. But we were happy that things went as planned and she woke up finally after about 45 minutes. (Long nap.) After waking up she said some funny things. She told me that she was "a student" there. I told her yes she was a student at her school. She claimed that she was a student here at the University. Quite funny Ava!
We had to wait a little while as the x ray people were getting ready. They needed to make sure the ph probe was in the right stop. She was clearly out of it telling Emeline that she was irritating her. When she was not even by her or saying anything at all. (Poor Ava) After finally getting her settled into her room she started acting more like herself. Her and Emeline were back to being best buds!
Later on Brian came up to check on her. She is always excited when her dad is there. We were able to walk around the hospital. She enjoyed that.
One of our stops was at this place.... oh boy do I remember and have strong feelings about this floor. She's grown so much. Seems like a lifetime ago yet just yesterday. We were praising God we weren't on this floor!
Sadly Emeline wasn't able to stay so her and Brian drove back home. Ava was pretty tired so at around 9 she went to sleep. She slept great all night.... well me on the other hand I kept a watchful eye out and tried to close my eyes but couldn't come to a full rest. When she woke she was excited about ordering her breakfast. She loved getting whatever she wanted.... no limits!
This was her "purse" device she carried. It was hooked to the probe. Each time she cough, gagged, cleared her throat, was up or was laying down she had to push the appropriate buttons. She was a pro by the time the 24 hours was up.
We decided to make a Youtube video of the PH test. If we can help someone we will be happy!
I just can't believe how grown up she looks!
Here is what her stomach and esophagus looked like. All biopsies of her stomach came back normal. But as you can see there is a hole that lets food reflux back up.
Finally I have talked to all the specialist and have gotten back all the test results. (It takes a while for some.) So the 24 hour PH probe showed that more than half the time the cough was due to reflux. It did get better after she took her second daily dose of Prevacid. (She's on the maximum dose aloud.) Our GI. Dr, Ebach said she was going to talk to surgery about her options. I never like hearing that! Can anything ever be easy? Finally yesterday I was able to get a hold of the Pulmonologist that did her bronchoscope. She said that her left lung (The lung that had all the organs in/on it when she was born) is narrow in spots. (It's restricted.) This is not a surprise to us. We knew her left lung was not right. We just didn't know the exact extent of it. The doctor thinks it could be a contributing factor of the cough especially when she is fighting a cold.
A few days ago Ava's cough got a lot worse. I'm wondering if it is the start of a cold so the Pulmonologist wrote about 3 new medicines and one good old standby (Prednisone).
Atrovent HFA Oral Inhaler -(200 INH) Given only when she is very bad. Every 6 hrs.
Symbicort 160/4.5MCG (120 oral inhaler) 2 puffs, 2 x's a day
Prednisone 20 MG Tablets- 1 and a half pill 2 x's a day (when needed for cold)
Ipratropium Inhaled solution 2.5 ml- (use once ever 6 hrs as needed)
So this is the new plan. Please pray that this will help her. I really don't want her to go through anymore surgeries. I know with Ava nothing can be simple. I went to her school today to take yearbook photos for the smaller kids Christmas concert. After it was over I went up to Ava's classroom. She was so happy to see me. Her teacher let her go home early. She's been such a wonderful teacher. She's so much like me. She also has health concerns so she is vigilant about keeping her classroom as germ free as possible! It's so neat how God sends us the perfect angels to help us! Thanks Mrs. Behnke.
Again thanks for all your love, support and prayers. We appreciate you all!
~Terri Helmick
1 comment:
She's beautiful and so grown up. I still picture her so small when we first "met" online. Praying the new plan will work and she won't need more surgery. Pam winter
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