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.


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!

Saturday, August 29, 2015

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.


Friday, July 17, 2015

Appointment Day

Hello Ava followers. I feel like it's been a long time since I've updated. Hope things are well with all of you. Ava slowly got over the virus she had. Oddly she had a cough for a good month. We are happy that it finally found the door out! Yesterday we had checkups with three different doctors at the University of Iowa Hospital and Clinics. On our way...

The children's hospital is really coming along fast. We try to take a picture each time we go. Silly me grabbed my Canon but forgot to get a card in it.... so the phone had to do it all today!

 It was just follow through appointments. Here are her "stats" as we call them. Her temperature was 98.6. Pulse was 96. (Very typical.) Her respiratory was 22. Blood pressure was 92/62. Her height 4'7.83". Weight 57lb. 8.6oz. Body mass index was 12.98 and oxygen was 100%. First she saw Nephrology, Dr. Diana Zepeda-Orozco. Ava loves her! She was having bed wetting issues. We have finally gotten her down to only wetting the bed 2-3 nights a weeks so MUCH improvement there! She was so happy for Ava as are we! The next thing she did was a lung function test. She was very worried about it this time for some reason. She asked me if we could skip it. I told her that if she only did her best that was all we could ask of her. Funny thing... she did AMAZING! The best ever so far. Next she saw her pulmonary NP Samantha Lee. We have had her the last three visits and really like her. She gets Ava's personality and loves asking her questions. Ava answers them all! She was happy to see that Ava had few asthma flare ups and was so healthy. The final appointment of the day was by her GI doctor Dr. Ebach. She's so good with Ava. We were a little shocked she had lost a ton of weight. I told her she looked so good. After that she asked Ava is she even recognized her. We laughed! She was very happy with Ava's health. We told her that occasionally about 2-3 times a week she needs a "rescue" as Ava and I call it, antacid for stomach pain. She told us that it started happening more to please let them know as they would do an endoscopy to see if there was something more going on. She's on Prevacid everyday to control her reflux but sometimes it's just not enough. Ava was getting very tired of the visits so it was nice when we were all done.

Sitting there in the office I started remembering ALL she had been through in her life. Her birthday is coming up next month and I start reliving that all over again. I was telling Brian that as SOON as I hit the parking garage I get this panic feeling that she isn't going to make it. I have to look at her and assure myself that she DID make it and it's all okay. I've found myself suffering from post traumatic stress disorder. It happens when I least expect it. There can be a noise that sounds like a ventilator or someone in my family can become ill and it set me into a panic mode. I thank God every time that and reassure myself that things are good. God has been so good to us! I couldn't ask for anything more. The other day I was feeling down. (A lot has been going on in my immediate family with death and sickness.) I try not to let my kids see me sad. I'm always the strong one. The other day I was watching tv and Ava came in and curled up beside me, hugged me and said, "Mom I love you so much. You are the best mom in the whole world." Boy oh boy did I need that! As she left the room tears filled my eyes. THAT I told myself... that little girl almost didn't survive. THAT little girl 9 years ago was in my tummy and I was encouraging her each minute. I was telling her she was strong. She was loved and she could fight to stay with us. And you all know the rest of the story. SHE DID it! I marvel and thank God that He decided that I needed her right now. Ah... the love I feel. When I'm feeling down I think of God's wonderful, unfailing love. He knows exactly what I need and He knows your needs too! We decided to eat at Steak and Shake, a restaurant that we don't have in our town. Silly Ava right here...

As we were coming home from Iowa City we kept hearing the warnings of severe storms in our area. The closer we got the darker and scarier it looked out. Then they said the people on the road we were on should get off of it as a possible tornado was possible. We were pretty scared but found our way home. A town about 35 minutes from us got hit pretty hard by a tornado. We were lucky. We were safe! Praise God.

Thanks for checking up on Ava. We always appreciate your thoughts and prayers! We have been blessed with great health for her and I know it's in part to all her prayer warriors out there.


Wednesday, June 17, 2015

20th Anniversary

Hello followers! It's been awhile since I've updated. Things have been going good until a few days ago. Ava some how got a cold. It's moving to her lungs now so she is coughing quite a bit. She's such a trouper though doing her steroids and her inhalers. She's a pro and makes it look easy. A few days ago she complained of a very sore throat. I took her to the doctor and she thought it was just a viral infection. That requires no antibiotics so we will wait it out. The very next day came the cough.... yes not what we want at all. Send her some prayers this will end soon. Ava is enjoying the Summer on our new trampoline! She's a live wire! No kidding! This was her on the last day of school.

Brian and I met 22 years ago today and also got married on this very day 20 years ago. Looking back I can't believe all the things that have happened in our lives. If you would have told me I was going to have three beautiful girls I would have blushed with joy! As I reflected on many pictures I couldn't help but put them into a video. As I was uploading I noticed that they wouldn't accept the music that I had chosen due to copyright so I had to go back through it and add something I had created myself. When Ava was in the NICU after birth I would sing her the song, "I Surrender All." It was one of my favorite songs growing up and it still is. We seriously didn't know if we would bring our baby girl home... and wow did God bless us! I recorded these songs only to my computer so they are not the best of quality.... however they do serve the purpose of summing up our last 20 years. God Bless!