Procedures and Test Results

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!

https://www.youtube.com/watch?v=DFLgOCAe28U

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

Coughing and Tests

Good Afternoon friends! It's been a little while since I updated. Ava has been a busy girl. She's doing great in school and her favorite subject is Math.

She has been fighting a strange cough since August. We've been to the children's hospital about three times trying to get this figured out. When it started it seemed to be in her lungs. The lung function tests showed a slight decrease in her lungs. During the next month and a half she was put on three strong antibiotics which had little impact on her. We did return for a doctor's appointment and her lung function was a little better. During all of this time her inhalers and steroids didn't seem to help either.

The strangest thing about the cough is that's all it is a cough. She's had no runny nose, no sneezing.... nothing that usually starts the cough. During August her stats did drop a bit at night (nothing too alarming but not her usual) but lately she's been doing good with her heart rate and oxygen levels at night.

Her main issue... she will be in a deep sleep and all of a sudden just start choking and coughing very hard. She does this anywhere from 1-5 times a night. She sleeps in our room so it startles me. My instinct says this may be reflux related however she taking the maximum dose of Prevacid. (60 mg's a day)

So yesterday we had a long day of doctor visits and testing. First we saw her surgeon Dr. Shilyansky and her NP Josh Peterson. They both were happy to see Ava. They have been with Ava through her toughest days! They said her heart and lungs sound great. They aren't sure exactly what the cough could be. We then did a little hospital touring to pass the time until her Ct scan.

We visited the hospital library and the museum.

 

 

She wouldn't let me take her picture next to the skeleton. It was so cool! She enjoyed brushing the teeth though.

 

 

How much can Ava lift? Well quite a lot apparently.

 





We then made our way onto the patio. She was very hungry but with testing and not being allowed to eat or drink we had to keep her very busy. She enjoyed being outside a lot as you can see!

 

Can you see Ava? She thought it was funny if she looked at us instead of the pretty buildings!

 

 

Next was not her favorite thing to do but necessary for the test. She had to get an IV placed for the contrast. She was a great sport. They sprayed her first with cold/numbing spray before the injected the needle. No tears at all!

 

 

After waiting about 25 minutes she started getting itchy under the IV and she started to panic. (Not sure where she gets that from... maybe me?) But Brian and I tried to talk her about different things to get her mind off of it. It didn't help that she has eczema on her arms so I did feel sorry for her. 

 

 

AND now it was time. The nurses and staff were really good with her. They let me stay with her until the test started then out I went. It's nice that she is getting older and can voice her own concerns to them.

 

They said she did great. In the hall we heard her tell them that we were going to Olive Garden to reward her. Silly girl!!

 

 

She is getting so big. She's not my tiny baby anymore!

 

 



So after the CT we went to her gastroenterologist, Dr. Ebach. She's a great doctor that's been caring for Ava since she was two. She is also puzzled with the cough. She wanted Ava to have a barium swallow study test done. So up we went to radiology. They got us in very quick. As soon as the technician saw Ava she told her how she remembered all about her. She said it was great to see her looking so grown up. It's so nice when the staff recognize us and "get excited" when we come back.

 

With this test she had to drink barium. They then used an x ray machine and viewed her drinking then swallowing. Since she has a majority of her coughing at night time they wanted her to drink lying down. The first thing I noticed was that the liquid didn't go straight down. It curved like a rainbow then went to her stomach. That made me nervous but they assured me with her cdh history that this was just how her anatomy was and not to worry. (Strange thing is we've had this test done before and I didn't remember it doing this curve thing before. I'm sure they will double check everything then get back with us. Again Ava did everything they told her to do and all with a smile! She even enjoyed the barium drink... Yes she did!

 

 

And goofy girl waiting on the doctor.

 

 

Since Brian was there I got him to snap a picture of me and my sweet Ava. She's come SO far!

 



 

Dr. Ebach wants to do an endoscopy on Ava. This is a test that looks down the trachea and to the stomach. They want to rule out anything that may be wrong with her windpipe or trachea. Also make sure her lungs are working fine. (I tend to think this isn't lung related since her stats are fine and she is acting and feeling overall fine, except for the nagging cough.) They are also possibly wanting to do a bronchial scope at the same time as the endoscopy to save her from being put under twice.

 

When we left Brian wasn't really happy that we still had no answers. I'm kind of used to this by now. We know that running tests and eliminating things is our best bet. I just don't want this cough to trigger something bigger. I was encouraged by the x rays showing her diaphragm is still holding up. THAT is huge to a mother of a child with congenital diaphragmatic hernia. We always think about this. I don't think it will ever leave our minds.

 

It was a very long day. We were at the hospital for 6 hours. I know I don't even have to ask anymore for prayers... you guys always come through. Thanks for stopping by and supporting us and Ava.

 

~Terri



 

 

Happy 9th Birthday Ava!

 

These two top photos were taken this morning before school.

 

Hello! Ava is still fighting her cough but she is the happiest I've ever seen her today. She is thrilled today is her birthday. She went to school and I'll be taking her for her birthday lunch. Special day for a Miracle girl!

 

Today is bitter sweet for us. Ava joined the world and we knew that she would be fighting a very hard fight. Some doctors told us that her diaphragmatic hernia was so severe that her odds of surviving were 30-35%. They suggested termination. We trusted God and are thrilled that today she turns 9. I often wondered if stories of Miracles from the Bible happened today.... Ava is just that! All the signs pointed that her body would not be able to sustain it's self. Yet over and over in her 9 years she's faced over 6 major surgeries, countless hospital stays and many "close to death moments"... God has blessed us all more than I could ever try to describe in words. Today our entire family raise her up and thank God for this AMAZING Miracle. So many prayers were said over her lifetime and He heard and answered each one and we are so grateful!

 

~Terri



A lot of August

Hello friends! Well this has been a busy month. I hope you are all happy and healthy! Ava has had two illnesses. In the middle of August she got a weird virus that lasted 48 hours. It was like a stomach virus and then it turned into a sore throat with a fever of 103. The good things was it left as fast as it came! Then last week she started coughing. No other symptoms just a cough. I can't ever recall she's ever just had a cough. I was a little baffled so after starting her on her "asthma regimen" after a few days of her getting worse I took her to our local doctor. She said she sounded junky. She wanted me to switch up our usual regimen with Iowa City and I got a little worried so I called her pulmonologist at the University. They told me to have her call them so they could explain their reasoning. She declined. That was fine by me although I was a little disappointed as I love our local doctor and she has saved us countless trips to Iowa City. However I'm still going to use her we will just have to agree to disagree on her Prednisone care in the future. On Wednesday Ava was getting much worse. I got her in to see her specialists in IC. They did a lung function test and it was compromised from her last healthy one. She has (acute) protracted bacterial bronchitis. It's due to her "non-normal" (my new word) lungs due to her diaphragmatic hernia at birth. It makes me sad to think she has to deal with the after affects of (congenital diaphragmatic hernia) her birth defect her entire life. They prescribed her two weeks of antibiotics. So hopefully we will see results soon.

Other HAPPY and EXCITING things that have happened this month.

We went to the annual Iowa Make a Wish reunion. We made it into a mini vacation.

 

 

 

If you look really close you can see Ava in the glove... I love the world of photo shop!



 

Then we went to Adventureland. What a fun family time!

 

 

 

 

Ava also started school this month. She was very excited to get back to a normal everyday routine! I love and adore her teacher. A strange but true fact. The year Ava was in the hospital in 2008 with her reherniation and bowel issues was the year her teacher was in the same hospital battling for her life with cancer. They share something very common... they are both strong fighters! So she was very excited to have Ava in her class. Most importantly she is exactly like me on the "germ" issues. (I LOVE that!) Oddly Emeline had gotten her as a teacher and the entire year had a sub due to her fighting cancer. If I haven't said this a million times on here I'll say it again. God has perfect timing and He knows exactly what we need when we need it!

 

Of course Miss Ava has to have perfect, back to hair style. So I managed to pull off this really cute look at home!

 

 

 

 

 

 

 

 

I also took the girls yearly photos. I have been blessed with the most beautiful girls inside and out. They all have genuine caring hearts. They always think of others before thinking of themselves. I thank God daily that he brought Lexis, Emeline and Ava into our lives!

 

 

 

 

Please keep praying that Ava gets over this cough. As always thank for your love, support and prayers. I believe all that pray God hears! Blessings to you as you walk in God's perfect path for your life.

 

~Terri