Thursday, April 25, 2013

Encouraging News!


Hello Ava friends! Ava’s been battling a very bad cold but we are on our way down the hill… I think! She got a runny nose on Friday night. She said her body ached and she just didn’t act like herself all weekend. I decided to keep her home from school as she didn’t look well. On Monday we had a beautiful day outside. I was doing yard work and she spent the afternoon outside with a light jacket on. (It was 72 outside.) That night she started coughing. She sleeps in a twin size bed by our bed when she is sick. If she’s not doing good I hook her up to the Oximeter Monitor. This lets me know her heart rate and also how well she is getting oxygen. Her oxygen levels would linger in the 92-94 most of the night but twice they sunk to 88. I would get up to see how she looked and if she needed a cough reminder I’d wake her and ask her to give me a good cough. She would. Tuesday morning I called our local doctor as her nightly destat scared me. She told me that her lungs sounded very tight and that she had a really bad left ear infection. She prescribed a higher dose of inhaler Albuterol and also a Adtivar inhaled disk. (This is a steroid.) She also suggested I start her regimen of Albuterol and Prednisone. We had already been doing the Albuterol inhaler but was wanting her to confirm tightness to start the Prednisone. She also prescribed Antibiotics for her ear infection. I told her we had an appointment tomorrow with Ava’s Orthopedic doctor for a Sine check. She told me if Ava was any worse overnight to see if we could get into see Pulmonary the next day. I assure her I would. Tuesday night was a repeat of the night before. I got little sleep as her monitor kept alarming as soon as she would get to 90% oxygenation levels. Twice again she dipped to 87. I had to get up and physically shake her and ask her to cough. This night she was much harder to wake. We’ve never had this issue before where you didn’t wake easily. She could have just been so tired from the cold her body was deep in sleep. However if she didn’t wake she would choke on her mucus and then that would send me in a panic. We woke early for her appointment. She seemed to be statting better and in a much better mood. By this time she’d gotten three doses of the liquid steroids, three doses of the inhaled steroid, two doses of antibiotics and many doses of Albuterol.

We made it to Iowa City for her spine appointment at 7:30 am. She was still coughing a lot so we masked her as soon as we got inside. Ava sees an Orthopedic doctor because of the increased risk of scoliosis due to her diaphragmatic hernia. And since she has a patch the risk is even greater. She did great with the new x-ray machine. It gives less radiation then the older ones. They explained to us that there are only 25 of these machines in the United States and they were lucky enough to get one. I’m so happy as little Ava has been exposed to so much radiation in her short little life. We never know what damage that will do later on in her life. I found a really interesting article about this new EOS device.


This machine looks like a closet. I think Ava thought it was going to move around her and she was a little afraid. We assured her she would be fine. Only Ava had to remain still.


She looked so cute in her little hospital gown and robe. It brought back some not-so-good memories for me though.

Ava 1974

Although she didn’t feel well and she had a terrible cough she still had energy to joke and play around with us. The intern asked her if he could shake her hand and she told him no! We all laughed. Then he asked her if she wanted to wear a pair of gloves and her eyes lit up. She put them on quickly and he again asked her if she would shake his hand. She again replied, “No!” She’s a character… she reminds me of my Dad. Her favorite person on this planet of course besides her Mom!


Doctor Weinstein said that he saw no sign of Scoliosis and that her back looked really good to him. We always love to hear good news. He told us that he didn’t really need to see her any longer but I told him that I’d like a follow-up in two years if that was okay. He instantly agreed. I like to keep a close eye on her and that patch and what it could possibly do.

As soon as her appointment was finished we went to the specialty clinic to see if Pulmonary could work her in. They offered us an afternoon appointment. They wanted to do lung function test again before the appointment. I was a little nervous as she had done so much coughing. However she did well with it. We waited and waited then finally the nurse practitioner came in and listed to Ava. By this time Ava had been given two doses of Albuterol inhales so she was feeling a little better and her coughing had nearly diminished. I explained what was going on and the last several day with Ava and she told me that I needed to watch Ava and not so much the monitor. I got very upset inside. She didn’t know Ava nor me. She had not witnessed these weird choking/gagging and coughing episodes the two nights before. She asked me what I thought Ava would do if she was alone in her room. She felt confident that her brain would have sent a message that said to cough as her body needed more oxygen. I wasn’t so sure as she had so much mucus build up and she wasn’t waking even with me shaking her AND she continued to destat. I sometimes wish these “nurses” could experience my life. All the horrible things Ava and our family have had to deal with. She came home with an open abdomen, a wound vac and a central line due to obstruction and reherniation of her Gortex patch. I gave her fluids through her line not from her mouth. I gave her numerous antibiotics through her central line. I pumped her stomach through a small tube that ran from her nose. It was more work that I could even begin to explain. I watched my child almost die and you now I’m having to listen to a nurse tell me to “watch my child not the monitor”. Ahhh.. oh how I had to hold myself back. I prayed that God would help me get through that moment… and He did!

She listened to her lungs and she said their was no crackle. So off we left. I was just happy to know and be reassured she was probably on the road to recovery.


She did MUCH better overnight! I think a combination of all her medicines have helped boot this cold in the butt. Please pray that she continues to get better. AND sorry about some of the venting. I just get frustrated with medical staff that doesn’t listen and lumps me together with so many parents that don’t care. I CARE!



Raelyn said...

I'm back!! See, I have been absent from people's Blogs of late. Working hard on Little Miss Secretive Writing Project. Well, it is complete, at last!! {Lord willing. He calls the shots!!} Oh, it feels so good to be back!! ;)
My gosh. I do hope that Ava is recovering and feeling better!! ;)
Wait. Why is it more likely for kids who were born with CDH, and inserted a gortex patch, to get scoliosis? Just wondering. ;)
You are doing great. With everything. I might have felt tempted to swear at that nurse!! Keep it up, Mommy. You know your daughter better than anybody!! ;)

Raelyn said...

Happy Mother's Day!! ;)

Raelyn said...

It has been one month since you last posted on this Blog!! I am missing Ava, my Kindred Spirit CDH Friend!! I hope that she is well, healthy as can be, staying preoccupied with her last months of school, and impressing everyone!! ;-D