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.
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!
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
