Monday, November 4, 2019

Surviving Surgery on Your Kids

No matter how minor the procedure, pediatric surgery is NEVER fun. NEVER. It doesn't matter if you've dealt with medical issues since birth, or if your seven year old is going in for the first time. It might be minor for the doctors, but it's a big deal for you, and as experiences go, it isn't the best.

It's scary for the kids, and it's scary for parents. And no matter how prepared you try to be, there are always things you wish you'd known.

Five years ago, I wrote a post called "Surviving the Toddler Tonsillectomy". Reagan was two and a half, and it was an experience. I had so many parents reach out and thank me, because they were about to go through the same thing. I answered questions as best I could, and I felt good that our experience - the good and the bad - was helping others. I know how much I'd scoured the internet, and I like that real life experiences are out there.

In those past five years, we've dealt with a few more minor things. Madison had a "unicorn tooth" (techically a "mesioden" or a super-numerary) removed, which was sort of similar to an adult getting an impacted wisdom tooth out, which means out-patient surgery with an oral surgeon, and she had a minor procedure done on her kidneys. Both were done under sedation, but were fairly low key. 

But this past year we were stunned to learn that Reagan had a problem with her eyes that ended up requiring another surgery. At her seven year check up, her pediatrician noticed her eye drifting and referred her to a specialist. Turns out that she was a late presenter of strabismus (wandering eye), and after an attempt to remedy it by patching, her doctor determined that correcting it surgically was in our best interest. If the brain isn't able to connect the eyes to work together in early childhood, it often has a hard time making that connection later. So we found ourselves moving from simple patching to scheduling an MRI (we opted not to sedate her for the MRI) and a day in the OR.

Things felt much different with a seven year old who could understand what was happening than a toddler, so I'm writing again about what we learned!

1) Let them know what's going on (in an age appropriate way), and follow their lead for how much information they want.

We talked to Reagan about why this had to happen. She was with me as I did all the initial paperwork in the eye doctor's office, with tears leaking out of her eyes, and she cried fully on the way home. She didn’t seem to want the details of the actual surgery as much as she wanted to know how she’d feel, or what she’d see them doing. We made sure to answer all her questions and let her know that it was OK to be scared - it meant that she was going to do something really brave.

2) Dangle a carrot.

I’m not advocating bribing your kids to get through every little thing, but for this one, we needed to give Reagan something to look forward to, rather than a day to dread. We let her choose a reward, and she chose “Blingers” (which I still maintain is just a fancy name for a bedazzler). On the calendar, instead of “surgery day”, we marked it as “Blingers Day”. “Blingers Day” was something to look forward to!

That morning, when Blingers didn’t seem to be cutting it, I surprised her with two new apps she’d been asking for loaded onto her tablet. She was thrilled to play with them on the drive and in the waiting room, and it helped distract her. It felt like she woke up and found a treat.

3) Prepare

Our children’s hospital is excellent, and they offered a surgery preparedness class. We took it the week before her scheduled date. It was run by a child life specialist who walked the three kids in this group through all the steps. They each got a stuffed animal, and had the chance to tape the various wires and sensors onto the critter, feeling exactly how they’d feel when they did this “for real”. They got an anesthesia mask to place over their own face, and then the stuffed animal’s face. Then they got to visit all the rooms - from the initial prep, to the OR itself, to the post op “wake up” room. They saw exactly what they’d put on, and even got to don the gown, cap and mask as they walked their stuffies through. They looked at pictures of the nurses and anesthesiologists, and the child life specialist was even able to look up who they’d probably see, based on the schedule. They chose their scent for the mask, they learned what they’d be allowed to eat before and after, and what they could bring with them. Reagan left this appointment with SO many worries put at ease.

If you don’t have this option offered to you, see if you can get a book (there are a few good ones that give the basics), or even call the hospital to see if you can arrange a visit. Even if you can’t get into the actual OR, just seeing the hospital in a low pressure way can help.

4) Give them ownership of anything you can.

Reagan didn’t have a choice about the surgery, but we tried to give her the rest of the choices surrounding it. Her cutoff time for clear liquids was 7:00 am, and she’s a late sleeper, so we gave her the choice of letting her sleep, or waking at 6:30 to have Gatorade and Jello. She chose to be woken. We gave her the choice of what kind of Gatorade and Jello. She chose what to wear, what to pack in her bag, what music we listened to on the way. She got to choose her mask scent. She got to choose her post surgery treat of a popsicle or an ICEE.

5) Advocate for anxiety help.

Here’s where we failed. I knew, knew, that the “cocktail” Reagan had before her surgery when she was a toddler made a big difference in the day. When Madison had her tooth pulled, I requested it, but the surgical center told us they don’t like to overmedicate kids if they’re compliant. Madison was terrified, but compliant. I asked if Reagan would have the option this time, and I was told they’d monitor her in pre-op and make sure she was ok. I knew Reagan had massive anxiety over this, but on the actual day, she was putting up a good front, so I didn’t push.

Well, she did fine until the actual big moment came when they tried to take her back. She had a massive panic attack. She screamed and cried and tried to run. And by then, I was told, it was too late to turn back and medicate her. We dragged her into the OR and held her down while the mask was held on and I gripped her little hands and told her I was there and it was going to be ok while she screamed and hyperventilated and fought with every little bit of strength she had. It was horrifying and heartbreaking.

Afterward the anesthesiologist told us to always, ALWAYS fight for the anxiety medication, even if it doesn’t seem necessary. We know our kids, and I knew that however she was “complying” that day, that we had weeks of built up fear bubbling under the surface. It is NOT overmedicating to avoid a traumatic experience. Fight for your kids, and TAKE the meds.

6) Take care of yourself.

The poor child life specialist who had just helped me hold down my screaming seven year old helped me regather my bearings, and then told us to go get food, coffee, something, but to LEAVE the waiting area. Take a walk, browse the gift shop, but don’t sit and stew. We knew that we couldn’t do a thing, and that we’d get updates, but that we would just worry sitting in the waiting room. So we left, had a late breakfast/early lunch, wandered a bit, and were back to sit and wait long before we needed to hear an update and hear that she was on her way out.

This served a double purpose. Obviously, we didn’t eat in front of her that morning, and we knew from past experience that we wouldn’t eat in post op. You can’t help anyone if you’re falling down from hunger, so it was smart to feed ourselves when we could. It took us out of the waiting room where we couldn't help but think about what was going on.

7) Be prepared for a tough wake up.

I knew this from past experience, but kids don’t always wake up peacefully. All Reagan wanted to do was rub her eyes, HARD, which is obviously not encouraged after eye surgery, and she was fighting hard and crying. We knew it would pass - she’d doze back off after the medicine, wake up a little calmer again, and then perk up more once she had that popsicle or ICEE in her. It’s hard to see, but it really does pass.

8) Understand your Post-Op instructions, and make sure your kid understands them too.

Reagan's toddler surgeon was one of those doctors with both great skill and an incredible sense of humor. He handed out his post op instructions and they were thorough and funny. We didn't have many questions because he had covered them all. Reagan's eye surgeon was more of what I think is the norm. He was kind and beyond capable, but far more serious and business like. While we understood the tonsillectomy = sore throat of the first surgery, we had no idea what recovery from eye surgery would entail, and his instructions were very basic, and in some cases, so vague that we were confused. We didn't know what activities she could do, and when she could do them. We weren't sure when her recovery was normal, and when things weren't right.
If you don't understand, ASK. 

Once we knew, we could explain to Reagan that her eyes might feel itchy for a few days, but wouldn't hurt. When she left the hospital she'd be sensitive to light for a few hours, but she'd wake up fine the next morning. She would need drops daily, and they might feel cold, but wouldn't sting. She could go and watch her soccer game, but she couldn't play in it. She could go to an arts and crafts birthday party two days later, but when they went to jump on the trampoline, she needed to watch. We explained why some activities were ok and others weren't. We marked on her calendar when she could return to dance, return to soccer, when she would finish the drops, and when she had a check up. 

Adults get anxious about medical procedures, so it's natural that kids do too, even when we do our best to prepare them. Taking time to walk them through everything they have questions about, and hopefully everyone will make it through with the least amount of stress!

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