Surgery and Procedures: A Guide For Caregivers

There are oodles of articles, brochures and pamphlets on how to prepare a child for surgery or procedures. I know, I’ve had the pleasure of reading many of them. They’re extremely helpful. What I’ve found over the last few years though, is that they’re not extremely helpful in preparing the adult that is accompanying and caring for the child. So, as we’re headed in for a procedure today, I thought I’d provide my own list of things I’ve found the most useful to know as the caregiver accompanying a small person for what can be a very stressful time.

What To Bring

The hospital should have what’s called a “Child Life Specialist”, or something similar to keep your child entertained during the endless waiting and to lessen their anxiety with activities and electronics. You’ll likely have your hands full doing the same. But, once they’re wheeled in, you will find yourself with plenty of time on your worrying hands.

First, bring your people. Family, friends that are family, church family, whatever. Bring a person that can run for food if you need it, grab some tissue if you need it, enable you to run outside for some fresh air and most importantly, distract you when the hands on the clock don’t seem to move. These people should also ideally be positive, easy going and good at waiting. This goes for a hospital stay if you have one afterwards too! If you’re looking at an extended stay, come up with a schedule ahead of time. I’d really recommend this if you have a large number of people so that both you and your child are well supported, but not overwhelmed.

Bring easy brain activities. I wouldn’t recommend any difficult novels, studying, or important work you can’t make mistakes on. I’ve often wished I knew how to knit. I think that would be a perfect waiting room activity. My personal recommendations are adult coloring books, your Bible, and conversation.

I’d highly recommend dressing in comfy layers. Temperature often varies drastically by the room you’re in and no matter the procedure or surgery you’re waiting on, it’s going to be a long day.

Bring a cell phone charger and let family and friends know ahead of time you may not be able to update at regular intervals. Depending on where you are in the hospital will depend on what kind of cell phone service you have.

On Your Way

On your way to the hospital, allow extra time to stop for your favorite coffee/ tea/ beverage and several snacks. For you. Since your little one likely can’t eat anything, you’ll feel bad consuming a large breakfast in front of them.

Or, if you’re like my husband, maybe you won’t.

But, either way, there are usually few decent food options in the waiting room, if any, and you may not want to make a run for food for fear of missing an update. Also, a muffin from the grocery store is far cheaper than the $5 dry and tasteless muffin wrapped in cellophane you’ll likely get at the hospital.

While You Wait

Once they’ve been wheeled away from you and you’ve said your very brave goodbye, you will get to experience the phenomenon of “hospital time”. The clock that, at times, flies by or stands completely still.

Now is when you want to take any opportunity to eat, drink, and use the restroom. I would advise against too much of the waiting room coffee, however. I still don’t understand why they provide every poor quality diuretic known to man. Not only does the caffeine not help anxiety, but about ten minutes into waiting I’m already too worried about missing an update to use the bathroom. And the only thing worse than anxiously waiting to hear how things are going, is anxiously waiting while simultaneously holding a full bladder.

This is the point I’m currently at. Doing my “busy” stuff, having a snack and trying not to watch the clock. Whatever you do, sit somewhere you can’t see a clock.

Sometimes, depending on the hospital, you’re back in the waiting room and sometimes you’re waiting in the pre-op room. I actually prefer the waiting room, if you have an option.

Here’s why. Look around you. Nothing helps distract you like connecting with other families in a similar situation. One of my best waiting room experiences was an all day affair during which two of my children were having surgery at the same time. Why? Because while I was waiting I was able to talk to another brave, waiting momma. This sweet lady was several states from home, by herself, with a medically complex kiddo while Dad was at home caring for their other young child. She’d been staying at a hotel for a week to have access to specialists, testing and surgery not available where they live. Things practically in my backyard that this particular anxious momma can forget to be grateful for.

Finally, try not to panic about time frames. You are literally at the mercy of the schedules of dozens of medical personnel. It rarely goes according to the schedule you’re given. If you’re worried, never be afraid to ask someone. They’re used to soothing worried parents, especially in a children’s hospital.

Do you have any helpful advice you’d add for caregivers? Please comment with it below!

Know a caregiver concerned about an upcoming procedure or surgery? Feel free to share!

Do you have a procedure or surgery coming up for a loved one that you’d like prayer for? I’d be happy to pray for you.

Fighting For Balance

It was the sideways glance and raised eyebrow from the pre op nurse that got me thinking. I can’t really blame her for not understanding because prior to life with medically complex kiddos, I wouldn’t have understood either. That they have medical, spiritual and emotional needs and each are just as important to maintaining some kind of balance in this crazy life of genetic disorders.

So, as they wheeled our oldest son out the door into surgery and I was sitting with our daughter in the same pre op room getting ready for her surgery, I explained to the nurse why I brought my thirteen year old son to see his first concert the night before.

I told her Imagine Dragons is his favorite band and his amazing aunt got the tickets for him for his birthday. I explained that he was very concerned that he not miss the last of soccer season, or the beginning of basketball season so this gave us a very small window in which to schedule the eye surgery. (Because, well, thirteen year old boy priorities.) I tell her that this rare disorder of theirs, Cerebrotendinous Xanthomatosis, comes not only with juvenile bilateral cataracts, but with a lot of anxiety. So, I scheduled the surgery on the only date available in between sports and brought him to the concert the night before. He had a great time and, although tired that morning, he was much less stressed about the surgery.

As the blood pressure cuff inflated and the heart monitor beeped I colored with our daughter and explained that for her, Dad spent the night playing Minecraft to distract her. The decisions aren’t always easy ones to make. Trying to balance all of their needs is hard. They are more than just flesh and blood. In the midst of endless lab work, exams, specialists and testing it has become more and more important that we make all of their needs a priority. Sometimes this means ice cream before dinner rewards for copious amounts of blood work. Sometimes it means skipping homework for prayer, not following that strict diet perfectly so that they can eat what the other kids at the party are eating or taking the injury risk for that activity that they love.

We have two medically complex kiddos and this means we have complex lives with complex decisions. And we’re just doing the best we can to meet ALL of the needs.

And you know what? Much later that day, our son was out of surgery, out of PACU and sitting somewhat patiently with us while we were waiting for our daughter to crack open her precious little eyes and the PACU nurse comments on how easy going and patient our kids are. After 12 hours in the hospital neither one were complaining and both were good naturedly trading jokes with us and the staff.

So, we will keep fighting for balance. We know our kids and their condition better than anyone else we come across, no matter their degree. Tonight, one day post op, they’re going to youth group. Because they want to, and it’s just as important as the medication they’re due for in an hour.

I’m not saying we make all the right choices. I’m definitely not saying we’ve got this thing figured out. Actually, we really screw it up sometimes. But, what I’m saying is, I’ve learned that our kids’ needs are complex and go far beyond the physical. I’ve learned that not everyone is going to understand that. I’ve learned that sometimes I will get a sideways glance and raised eyebrow at my decisions. And I’ve learned that that is totally okay. Sometimes I’m right.