Friday, June 3, 2016

Pain in her Side.

Good day everyone! It's been a while since I updated. She did have a coughing cold a few weeks ago but a little help from her inhalers and a five day course of Prednisone it stopped fairly quickly. I was very thankful for that.

Ava has been having pain on her left side for about 6 days now. As most of you follow you know that this is the side that her diaphragmatic hernia occurred on when she was born. The good news is that she's been eating great and her stools have been normal and frequent. (We keep a chart in the bathroom that she writes it down each time. Or at least tries to remember to write it down.) So yesterday we took her to see her AWESOME/THE BEST/GREATEST nurse practitioner. (With the exception of my sister Amanda since she is now an NP too!) He was happy to see her.

First we were off to ultrasound. They wanted to see if any of her scars. (Ava has a lot of them.) They looked at her initial horizontal scar from birth. Then they looked at her scar from her g tube and her drainage scar on the left side. We also saw her Gortex patch (fake diaphragm) on the left side. We learned or at least I did today at her large intestines runs right under her patch along with some fat on top of that. Her spleen is transverse meaning it right there under it going a different direction than normal. I did know that she had the ladd's procedure during on of her many surgeries. That is when they place the small intestines on the right side and the large intestines or bowel on the left side. (Normally you have your small intestines then your large bowel is underneath.) She also had her appendix taken out.... so I didn't have to worry about that. Can you imagine her having a pain and it being the appendix and it being in a totally different spot? I can and it would drive me nuts because even though they can chart where things are placed after surgery they can often move a bit.

So doctor Simon Kao did the ultrasound. He remembered us and especially Ava from all the years he has run tests on her. He was fascinated by her insides and brought another doctor along to explain what they were seeing. I'll have to say it was quite interesting. They don't see too many people like Ava everyday. She's a challenge to say the least. He couldn't believe how well she was doing. He even asked about Brian. He recalled how we were always there together advocating for her. It was great to see him! Here is Dr. Kao.... intelligent OH YES and he had an excellent memory. Awesome doctor to have on Ava's side!


Looking over all her scars he didn't see any hernia. (A hole in the muscle allowing the intestines to pass through.) So great news!

We then stopped into see Josh Peterson ARNP. He is always a breath of fresh air. He cares so much about Ava. He examined her and agreed with Dr. Kao that it could be stool in her bowels not coming out fast enough causing soreness. He also thinks it could possibly be scar tissue pulling since she is growing quite a bit. She is now 66 pounds and 4 feet 10 inches tall. So we are going to try a daily dose of Miralax and see if that helps make her side feel any better. If that doesn't work we will have to investigate more. Here is a photo of Josh Peterson. He has been a God send to us through these many years.



A few pictures of her yesterday. Here was her in ultrasound.


When we got into the room she was very cold. So baby blankets it was!



We stopped and ate lunch at her favorite place... Steak & Shake. Then went to shop at one store. Huh image what she wanted... this hat. An Ava selfie!


When we left he shook Ava's hand and gave her a little hug. Wow all we have all been through with her! She is such an inspiration to so many. In a few months she will be ten. This is crazy to me! She's been doing so well. Looking back ten years ago I was so worried and thought that possibly my unborn child would pass away at birth. Little did I know of God's plan for her life.

Lexis (Ava's sister) graduated on Sunday from High School. We were so proud of her. Time seems to be flying by! A few pictures of the graduation.



And of course I had to have a photo booth!




I think of of the neatest, bravest and cool thing is she doesn't mind that her scars show. She is happy with who she is and I just love this!


We thank you for your thoughts,support and prayers for Ava. We truly appreciate all who read her blog. 

~Terri

Friday, February 5, 2016

Lung Specialist... coughing continues

Hello to all of Ava's followers. Ava continues to cough however last Saturday she got much worse. So out with the Prednisone, Albuterol and Atrovent. These things all seem to help her improve. (She's also on twice daily Symbicort.) Plus maxed out on her reflux medications (Prevacid 60 mg's a day and 15 ml's of Zantac a day.) She's been out of school this entire week. We have been focusing on giving her the treatments, rest and to just get better.


I took her to see her Pulmonologist Dr. Ahrens. (He is about to retire.) It was good to get a "second opinion" per say even if they work in the same office. He is the specialist that Ava was seeing for many years then a few newer doctors came on board. I like them both but thought his many years of advise would help me to feel better about why she has this continued cough. He thinks that from the recent CT scan and the bronchial scope that yes she has narrowing in her left lung opening (which er expected due to her being born with cdh) however he says that seeing her CT and that there is no sign of "not working" lung he thinks that is does work more than we thought it did. When she gets viruses and cold it can get bacteria in it since it is "damaged" thus the asthma and the need for lung medications. He is wondering that in the warmer months if the cough will disappear. Winter is just so full of illnesses that she could be getting a cold on top of a cold and sometimes even in asthma patients the normal steroid/ Albuterol regimen doesn't help "some" colds/viruses... they just have to work themselves through. Her lung function tests didn't show any improvement since last time we were there . I think she picked up a bad cold.

As we were waiting several of Ava's usual nurse practitioners and staff came to say hello. It's so wonderful to know they truly care about Ava. They can't believe how tall she is getting. Ava is one in a million!

I'm going to watch her. We didn't bring any antibiotics on board quite yet but that will be the next step as she has been on Prednisone for 6 days now. She seems to be a lot better today so we will see. Her and I had a good time yesterday. So we welcome all the prayers as she continues to get better. I have faith that God will stop this cough. Thanks for checking in on us. We love all the support!

~Terri

Friday, December 4, 2015

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!


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




Friday, November 6, 2015

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

 
 

Monday, August 31, 2015

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