I wish I’d known…scoliosis surgery

Surgery for scoliosis

I thought we were prepared for surgery. We’d packed for the hospital, and then some. We had a team in place that was invaluable. We asked the surgeon every question I could think of. We were in the uncommon position of having actually seen family members (my brother and sister) go through similar surgeries.

And there was still so much I wish I’d known before-hand.

Little facts like your child is practically a newborn after surgery. We had to help her turn and to get comfortable for about two weeks. I helped her shower for at least six weeks, and get dressed too. Bathroom help will be needed.

And that coming off of Percocet is horrible, even when you wean off carefully.

Emotions will run high. For everyone. A lot of grace will be needed, all around.

It was hard to get her eating again after surgery. Favorite foods no longer tasted good and her appetite has been much smaller.

Things can go wrong. Four weeks after surgery number one, we went back because of severe pain and ended up in surgery a few hours later. The girl now has five disturbingly large screws in a bio-hazard bag that were removed from her back because something shifted a bit and they started putting pressure on nerves. She’s lost a little bit of correction because of that, but she’s still a lot straighter than she was before.

Their bodies will change. Most kids lose a significant amount of weight. I was told by our RN’s that about 80% of girls will start their cycle after surgery, regardless of whether or not they’ve gotten it yet or when they had it last.

Because of the movement of their spine, their muscles will hurt and possibly spasm. It’s not just recovering from the surgery, but the radical realignment of a part of the body that affects everything.

While we’re thankful to have had this procedure and know it’s something that will give the girl a better quality of life as she ages, it was a huge trauma to her system and for our family.

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what to pack when your child has spinal surgery

 

Scoliosis Surgery

Great title, right?

But it’s what I searched over and over as we prepared for the girl’s surgery and never could find great info on. Again, as I mentioned in my post about how to pack yourself for a stay with your child in the hospital, some helpful information down deep in message boards but nowhere in one coherent place.

Here’s my list:

  • Two extra firm pillows, one king size and one standard, with bright pillow cases (so you don’t leave them there when you finally get to go home). There’s a lot of adjusting and trying to get comfortable after surgery and those little pillows they give you at the hospital can be a pain to deal with, though they are perfect for putting between your child’s knees. Our RN’s loved us for not having to stuff a dozen pillows every time they adjusted her, which was sometimes every half hour.
  • A stuffed animal or small pillow for hugging. While the girl was in surgery, the pastor found a darling stuffed frog for her. By the time we left the hospital eight days later, that poor thing looked like it had been to war. She held onto it when she was being moved and it hurt. It helped keep her hands in position while she was sleeping and it helped keep the IV from bothering her so much. Humphrey the frog seemed to develop its own personality over the times we were there and everyone from this exhausted mama to respiratory therapists and RN’s treated him like part of the family.
  • A light blanket. Hospital blankets suck. Big time. The blanket we brought from home ended up feeling really, really heavy after surgery, but we had a goodie bag that had a lap sized flannel blanket that came from the child life specialists that was perfect. It also looked like it was decades old by the end of our stay.
  • Sugar free gum. Spinal surgery is notoriously bad for shutting down the digestive system, and the first thing the girl was given was sugar-free gum to start waking up her tummy. And as things can sometimes get chaotic in the ICU, it took us a while to find some.
  • Larger PJ’s or clothes and undies. When the girl finally got to take a shower and get dressed (7 days after surgery), we all wanted to throw a party. Seriously. We found larger clothes to be a bit more comfortable and work better with dressings, IV’s and the such. The girl also liked having her robe there if someone came to visit or she was taking one of her physical therapy walks.
  • Slippers with good soles. They’ll give you those awesome no slip socks at the hospital. They don’t slip against the floor, but they sure did slip off of the girl’s feet every chance they got. We did better with a few pairs of really soft socks if her feet were cold and a pair of slippers for walking in.
  • Lotion. All that time in bed seems to just leach the moisture right out of your body. We also ended up giving her a lot of hip and shoulder massages for pain and the lotion came in handy there, too.
  • Dry shampoo. After four days of sponge baths and laying in a bed, her hair was crazy. A little dry shampoo and brushing every day got her through until we could finally wash it on day seven (and then I was worried we’d have to resort to Dawn dish soap to get all of that oil out!). We french braided her hair in two braids before surgery and that seemed to be the best way to wear it until we were able to wash it more regularly.
  • Their smart phone. It was incredibly helpful for her spirits to get texts and video messages from friends. She was also able to play games and keep herself occupied for a few minutes. She wasn’t too excited about many other activities, though she did enjoy having me read a book out loud to her. Reading on her own is something she’s just getting back to, seven weeks after her first surgery and three after her second – it’s just been difficult to focus with the pain meds on board.

Anything else you’d add if you’ve been through a similar surgery?

Next week, one more post: things I’d wish I had known before surgery.

the long haul: tips for staying with your hospitalized kiddo

The Long Haul

The girl recently had a spinal fusion to correct scoliosis that had us in the hospital for seven nights.

And four weeks later, we were back for another surgery to remove a few screws that were pressing on nerves.

That meant three more nights of living and sleeping at the hospital.

Five of those nights were in that bed – y’all, under no circumstances is that a bed. It’s a vinyl chair from the early 70’s that pulls out into something you can sort of sleep on. The ICU at our Shriner’s decided I now hold the record for most nights on it.

I’ve decided I’ve earned my Girl Scout badge on the topic.

And because I had so much trouble finding information for parents staying with hospitalized kiddos, I thought I’d share what I learned.

  • Before the procedure, find out what your options are. We knew the girl would be in the ICU for a few nights. I was allowed to stay with her as long as she wasn’t intubated.  There was also a Ronald McDonald House and Kiwanis House in the area.
    I chose to stay at the hospital.
    I was also able to learn that there were showers at the hospital for parents to use, with towels provided. Toiletries, however, were not.
  • Think multi-use clothing.  Yoga pants, comforatble t’s, layers. I ended up wearing most of my clothes as pajamas. It was just easier and, quite frankly, I didn’t care. And slippers aren’t a bad idea.
    I walked from the ICU to the restroom one night in yoga pants, a tank, socks and no glasses. No one noticed and no one cared.
  • Bring a sleep mask. Even if you’re in a regular room, it’s fairly bright. If you’re in the ICU, it can feel like you’re trying to sleep on the sun. I have and absolutely love this one.
    I wouldn’t recommend ear plugs, though. If your child needs you, you’re going to want to hear them call.
  • Your own blanket and pillow.  Hospital blankets are kind of scratchy. And the pillows are kind of sad. It’s also a bit of home.
    And if you’re sleeping on one of those amazingly 70’s-tastic chairs, put a hospital blanket or two under the sheet. It helps keep from sliding around while you sleep.
    It took me three nights to figure that out.
  • Food related…Find out the cafeteria policies I found out after our stay that if I’d brought in a travel cup with a lid, I could have filled up anytime for free.
    Always get an extra cup of ice and water. I found myself getting really dehydrated.
    Ask about special menus and needs.
    Bring cash for the cafeteria and hoard your quarters for vending machines.
    Keep some snacks in your child’s room if possible. Some days, I couldn’t make it to the cafeteria during the hours it was open and was thankful for the protein bars and fruit I kept stashed in a drawer. Bottled water is also nice, or a water bottle you can refill.
  • Make an effort to become friends with your RN’s. They’re going to be the ones really taking care of your child and the ones to call the doctor if something isn’t right. After our two hospital stays and the rock start RN’s that took care of the girl, I want to buy them all Starbucks. And mansions.
  • Things to keep you occupied. Books, magazines, smart phone, tablet, knitting – it’s all good.
    But the old saying about sleeping when your newborn sleeps? It applies here.
  • Find an advocate. If you have a family member with medical training, take advantage of them. Seriously. The girl was having severe nausea and dry heaving after her first surgery. We thought perhaps it was just the eight hours of anesthesia, but my husband’s aunt – a retired RN – noticed the issues started within two minutes of pushing that button that gave her a dose of dilaudid, a powerful narcotic. She even kept her own chart of it and was able to show the RN on duty, who in turn was immediately get the medicine changed to something she was able to tolerate.
  • Get out of the hospital, if you can. Make a Target run. Walk around the block. Find the hospital patio and sit outside. If a friend or family member offers to sit with your child, give them a quick in-service and head out. You need some time for you.

Next week, I’ll share some things that made the girl’s stay easier and more comfortable, especially for spinal surgeries.

Have you been through an experience like ours? Anything you would add? I’d love to develop a place for parents to come and find this info and more.