Post Surgery Update

This is a continuation of my daughter, Riley’s, journey. If you’re unfamiliar and would like to understand the backstory of this post, get caught up here.

Not going to lie. This past week has been an emotional roller coaster.

The first night after surgery was rough. We thought she’d be sleeping a bunch because of all the medicine but it was the opposite because they had a hard time regulating her pain level–or so we think. Also, her list of medicines kept growing and growing. Multiple pain meds but then medicines on top of those to treat side effects like itchiness etc. There was very little sleep for anyone Monday night.

Tuesday she was popular and had quite a few visitors!

Despite her lack of sleep, seeing everyone, definitely helped to lift Riley’s spirits. Tuesday offered up smiles and giggles but also a few set backs. The narcotics made her itchy and she scratched/ripped the IV out of her hand. This wasn’t a big deal until she wasn’t drinking much of anything and they needed to give her fluids again. During all of this, the IV in her foot blew out.

Four people came in and poked and prodded while poor Riley screamed over and over, “all done.” She was tired of them digging around and holding her down to re-establish her IV. In the end, the attempt was unsuccessful.

Later that night, they had to come back with a special machine that actually lets them see the veins in the limb. Between the machine and getting some fluids in Riley to get her hydrated, they finally got the IV re-established. While we got smiles and giggles April and I both went to bed feeling discouraged.

Fortunately, we were blessed with some great nurses–the whole week really, but especially Tuesday night/Wednesday AM. It was the best night of sleep for both April and Riley during the entire hospital stay. The nurse would come in, give medicines, and even held Riley’s hand until she drifted back to sleep.

Wednesday she woke up and was more like her old self. April asked if she wanted to sit up and eat her breakfast, instead, Riley STOOD up! She was already starting to turn her head and showed a lot more movement than the prior day. That morning, they went to the little playroom for patients and played for about an hour.

She was wobbly on her feet but didn’t lose her independent spirit and wanted to run and jump on her own. It was like trying to chase a bull through a china shop but eventually she wore herself out and took a four hour nap!

The doctors were encouraged by this and suggested that we could go home later that evening. Riley, decided she didn’t want any of it anymore and put up a fight for all of her medicines. We just weren’t comfortable with going home after only one good day and expressed our numerous concerns once the doctor returned. After our discussion and observations of Riley they agreed that it was too soon to send her home.

Some other highlights: Riley got to see a pony and she pet a doggy–she’s a little sketchy with people and animals–which is why we were surprised when she wanted them to put the doggy in bed with her! Very cute.

Riley is now home, safe and sound. She is continuing to fight us on taking her medicine. The only way we can make it happen is to slip it into her drink or food. But the kid is smart–she’s getting to the point where she won’t eat/drink it unless she sees you make it or open it. Certain foods like applesauce–forget it–won’t go near it.

Her incision is healing up really well–the above image is from the day after we brought her home.

I believe we still made the right decision. As the doctor said before, as soon as she opened Riley up, she could see the decompression occurring. I have faith that this surgery solved long term problems that could have happened–like paralysis. However, we’ve been trying (but mostly failing) to keep Riley and Cadence relatively calm (compared to their usual rambunctious selves) because…

Riley is still getting headaches.

The thing that terrifies me now is based on her experience and all the pin and suffering she went through with this surgery, she refuses to take medicine that will help ease the pain, and we’ll catch her holding her head. When we ask her if her head hurts–she tosses a thumbs up and says, “no-no-no, head. Better.”

Today, Cadence and Riley played and laughed harder than they had since she’d been home. Riley kept stopping and running over to us holding her head saying it hurt. When we asked her if she wanted medicine, she’d jump up and run off.

I sincerely hope that the pain she is feeling is from the surgery and not the same old headaches as before. I hope that as she heals and gets better, the headaches will fade. And I hope that these memories fade so that she’ll trust us, trust medicine, and be honest about her pain.

Thank you to everyone who have been asking and thinking/praying for Riley. We’ve got a long road to recovery ahead.

That is all for now. I think I’ve rambled on enough. I’ll leave you with a smile (from today-Sunday).

–DSY