Yesterday evening around 6 o'clock, I flipped Ava over to check her nearly healed surgery incisions and caught a climpse of something shiny on her back. Panic set in. She had been sitting on the couch next to my husband, Drew, so I asked him to take a look because I was sure that a titanium rod was breaking through the skin. "WHAT?" he asked. Ava wasn't crying, she wasn't nervous. In fact, she was so relaxed that she let her kitten keep playing in her hair. Drew and I flipped her over once more and looked together. That time I was able to see the serial number on the rods. I knew without a doubt we had a serious problem. My heart sank and my stomach knotted, and I called the hospital.
The funny thing about being the parent of a medically fragile child, is that you are always prepared for the worst but never really ready for the worst. I felt so heavy with worry, yet while I waited for the on-call ortho to call back with instructions, Drew and I managed to get everyone cleaned and dressed, 3 overnight bags packed, money packed, chargers packed, family notified, sitter arranged for the boys. We didn't even have to ask each other who needed to do what, we just did it. It's amazing how good we have become at planning for the unplanned! I can't say it has always been that way, though. The first two years of Ava's life were total chaos. It took many emergency trips to our "vacation home" before I remembered to pack enough quarters for snacks, or to bring winter clothes to make the cold environment comfortable, even if it were boiling outside. I can think of many times where I'd have to call my parents and ask them to bring to Jackson whatever I'd forgotten. This time around, I knew where everything was and had it bagged immediately (prepared for the worst). But I was so terrified to even touch her back long enough to pick her up and put her in the car (no where near ready for it).
One hour into our drive to Jackson, Ava started sobbing and I lost it. We cried together for a good ten minutes and then she looked at me, said "Mah" (mom), and stopped. She stared at me with such a peaceful face until I stopped crying and then she turned and looked out of her window for the rest of the ride. She has always been tougher than she should have to be, but the older she gets, the tougher she becomes for me. I knew exactly why she looked at me and said that. She needed for me to be mommy, her transporter, and totally focused. How could I have made that drive if she weren't strong for me?
We arrived at UMMC ER shortly before 9 PM. It was one of those nights where the hospital ER was so swamped that worried visitors poured over until the porch outside by the ambulance drop-off. I took her in with her wheelchair and whispered to the receptionist what happened and what doctors were expecting her. It's not something I wanted anyone around us to hear. For some reason, I'm still not comfortable with how other parents in the ER react to Ava. I used to feel horrible when we'd walk in and see a very worried, very tired mother holding a screaming infant, having waited hours to be seen, and then have the staff whisk away a seemingly perfectly calm Ava immediately. I do realize how unfair it can look. She has such a high tolerance for pain, but she also has a great awareness of how not to stress people. The only problem is sometimes it means her emergencies go unnoticed or seriously downplayed until a much worse problem occurs, which is exactly what happened last night.
Fast forward to 11 PM, 4 XRays revealed there was no break in the rod (Praise Jesus!). It was determined that the tissue on the outermost side of the rod is very thin and weak, and it's believed the rod simply pushed it's way out. At around 1 AM this morning, she was moved to a room and all of the pre-op paper work and visits were completed. Almost as soon as corrective surgery was to begin, we were told that the tissue around the original incision is not healthy enough to sew together, so surgery has been postponed until a decision can be made about how to cover the rod safely and permanently. The risk and worry won't end with that, though. There is a concern that external infection will find it's way inside her, and if any of the infection gets on the exposed titanium, all pieces will have to be taken out and replaced. The last time she had these rods installed, she spent two weeks recovering in PICU and got a trache to help breathing during the recovery process (a trache she ended up keeping for a year and a half). It is not by any means an easy or simple surgery. The second concern is for future lengthening surgeries (which is where the original incision came from this time). Because her organs were so cramped for two years, it's important she have the rods lengthened a half-inch to an inch every 5 to 6 months. Unfortunately, on a child so young there are only so many places to cut and if the tissue is too weak to heal than it is too weak to cut. Ava needs to be at least 10 before the rods are removed permanently, so that her organs will have had a chance to reach full growth potential.
The titanium rod has now been exposed for 17 hours. She's laying in her hospital bed watching cartoons and entertaining anyone who walks into the room. I'm sure she has shown every nurse on the floor her super cool Dora pajamas at least once! She colored a little and looked at book. She babbled to me (I'm sure it was a very interesting story). We've held hands. We took a nap. She's living out this day as if there is absolutely nothing out of sorts with her body. That sweet little girl isn't even upset that she's having to spend every moment on her side (a normally upsetting position for her thanks to sensory issues). Please pray that an answer will be given to the surgeons so that her back can be closed soon. Be sure to thank Him for making such a beautiful, strong little girl and I will thank Him for trusting me to be at her side.
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