Hello Ava friends! So as you know I don't usually post unless something is "up". Well Ava is giving us a run for our minds lately. Last Thursday she came running into my room saying her heart hurt bad and she thought she was having a heart attack. I told her to take some deep breaths. She started crying but then I reassured her that she was going to be okay. She did what I said while I hooked her up to her pulse oximeter machine. Her heart rate was high which was normal for the "panic" mode she was in. Her oxygen levels were 98-100. I asked her to explain to me the pain. She said it was a sharp pain and got worse as she breathed. I gave her a dose of her reflux medicines thinking that it could possible be reflux. (In the past she has silent reflux so she rarely has symptoms or can feel the burning.) Giving her the medicine seemed to help. That night she began to run a fever and had a slight cough. (101.8) She said she was so tired at school and almost fell asleep.
Friday I took her to the doctor and she said that her right lung (her good lung) was slightly diminished. She ordered chest x rays and gave us Zithromax to start. (It is an antibiotic.) The x rays came back fine which made me feel SO relieved. She started feeling better within a few days. I was keeping her up in the sick bed, next to our bed, with the pulse oximeter. (I can sleep better this way.)
On Tuesday night her heart rate dropped below 50 while she was sleeping. Her alarm sounded. I wasn't too concerned as I thought she was just extra tired. I did schedule and appointment the next morning with our local doctor because she seemed worse and I wanted to ask about the heart rate. (Ava has ALWAYS been on the extra high side of normal.) The doctor was REALLY concerned. She told me that this heart rate was way too low for Ava or anyone. she wondered if it was a bad side effect of the Zithromax.
Then on Wednesday her heart rate dropped to 44. I went over to her and checked her pulse myself. I got 38 beats a minute and they were very shallow. I grew concerned. I woke her and the heart rate got better. I then let her go back to sleep but it continued to get lower and lower.
I called our local doctor on Thursday morning. She suggested I take her to her cardiologist (She was discharged from him two years ago.) So I called University of Iowa Children's Hospital. I talked with her nurse practitioner from the surgery department. He suggested I make an appointment with Cardiology soon. God helped us get in, Someone had just canceled for the next day. Wow that was a miracle all in itself. Thursday night even before she was asleep her heart rate was in the low 60's. I knew I had a long night of beeping ahead of me. She did drop quite fast and 10 minutes after she fell asleep her alarm was going off. (It goes off when she drops below 50.) She dropped to 47 but hung in the upper 40's lower 50 most of the night.
So we woke early and headed to the doctors. They did blood pressures on both her legs and on her left arm. Next they did an electrocardiogram (EKG) He said it all looked normal. He listened to her and did an overall check. He didn't see any swelling of anything else associated with heart failure. He suspects that she picked up a virus that could have caused her heart to function this way. I told him I was concerned as this is NOT like Ava at all. Her heart rate has always been high. (Most times I would hook her up to the pulse oximeter I would have to increase the heart rate setting so it wouldn't alarm. He agreed that this was very unusual for her. He ordered a Holter monitor. This will allow them to monitor her heart and see the variations of the beats and determine if there is a problem.
The thing about Ava and I that are similar. No matter what is going on with us we smile and laugh. It is just who we are. We've got to be almost dead in order for us not to have a happy face. Here are a few pictures of her appointment today. This is the electrocardiogram.
The nurse asked if she wanted to remove all the stickers herself. Of course she did!!
When we came home she was excited to show her Dad and sisters her new hook-up. Lexis told her she was now a robot! There are 5 leads and the monitor itself is attached to her jeans.
Her stomach has been through so much... yet she is proud. I love this about her and hope this never changes.
When we got home I messaged my sister Amanda, she's been a nurse for a long time now and decided to go back to school to become a nurse practitioner. She was concerned with Ava and asked if they had run any blood tests. I was going to ask this but with all the questions I had I forgot to ask that one. I called our local doctor here in town and asked if she would mind ordering the tests. We wanted to check her electrolytes, potassium and magnesium levels. She was happy to allow us to do this. So I took Ava out for the test. I told her there was one more test of the day. I knew if I told her what it was she would start to panic and worry. So out we went. When it was time the lady called us back. Ava was all smiling and talking with the lady. She sat down in the chair and the lady kept talking but began putting the tight elastic around her arm to draw her blood. Ava pulled her arm away and said, "What are you doing?" I wish I had a video recording of this. I felt so bad for her but it was so funny. I sat beside her and while she was in my arms I explained the last test was blood work. She started crying. She was upset with me for not telling her. The lady did an awesome job and with one small stick and 4 vials later she was done. I know it was the right decision not telling her. So now we have to wait to see what comes back.
She is getting so grown up. She can talk to the doctor herself. I can't help looking back over the years and seeing how she interacted with all her doctors and nurses.
I thought you might like to see her in her Elsa costume. (I hand made this just for her.) This is Ava at school. This was her first year she didn't have a cold and could participate in the Halloween parade. I dressed up as a snowwoman. Not quite Olaf, huh? :)
Please pray this is something simple and perhaps just a virus doing strange things to her and that she will get over this as soon as it started. It's not that common that diaphragmatic hernia survivors have heart defects years later if they didn't have a heart issue at the start or after the pulmonary hypertension resolved due to the cdh. This is bizarre to me. Thanks for all your love, support and prayers. God hears our prayers and knows how much we all love and care for Ava.
~Terri
