11 Things We Learned After Two Surgeries with our Toddler

Tips to Help Parents Prepare for Ureteral Reimplantation Surgery

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When my daughter had her first ever VCUG around four months old and was officially diagnosed with grade 4/5 Vesicoureteral Reflux (VUR) on her right side, we had absolutely no clue what to expect next. As we learned more and over time, we gained a better understanding of terms like “prophylactic antibiotics”,” breakthrough infections”, “clean catch”, and finally “reimplantation surgery”.

The prospect of any type of surgery with our infant terrified us, but the doctor assured us that with reflux this severe, the chances of our daughter outgrowing it were slim to none and that she would most likely start to experience the dreaded “breakthrough infections”. After a few breakthrough infections, we decided to schedule the surgery when she was almost 14 months old.

While we were vaguely warned that there is a chance the reflux can jump to the other side once one side is repaired, we certainly did not expect her post-surgery VCUG to show severe grade 4 reflux on the left side now! She hadn’t had any trace of reflux on the left in any of the original imaging or testing, but it’s apparently not uncommon to switch sides after surgery.

We learned a lot after that first surgery and even more after the second one. I wanted to share some of the things we learned for any other parents who might be facing surgery with their kids.

1. Help Your Child Understand What’s to Come

Someone once told me that you shouldn’t sugar coat health care with your kids. Instead of saying “I’m so sorry that we have to give you shots” you should say “It might hurt for a second, but we are getting shots to make sure we stay healthy”. Depending on your child’s age and maturity level you might not be able to get much across but trying to explain that they are going to have an operation to help make sure they stay healthy and/or don’t get sick anymore can be helpful.

I tried to explain to my daughter that she would be in the hospital and we would be with her and she would take a nap with the doctors and when she woke up we would be there and we would stay together in the hospital so she could get stronger.

Not explaining the process could make it scarier than it needs to be, and that is a big concern especially for VUR kids who have most likely already been poked, prodded, catheterized and VCUG’d, etc. If you’re not good at explaining, there are some helpful books written by pediatricians that are good at explaining things in a non-scary way.

2. Try To Get an Early Morning Surgery

While the rules about eating and drinking leading up to surgery vary by hospital, in most cases, kids and babies will need to stop eating and nursing for around eight hours before checking in for surgery. Clear drinks typically need to be stopped about two hours before surgery. Not eating all day is incredibly hard for adults, let alone babies and small children who have smaller tummies and don’t understand why they have to alter their routines.

Our first surgery was at 2 pm and it was extremely difficult on our 14-month-old. I did make sure she had a variety of clear, approved foods, like jello and popsicles, to make her feel like she had choices and to keep her occupied, but by the time we checked in to the hospital she was very cranky and weak. It was hard putting her into surgery in an already weakened state. The second surgery, we had an 8:00 am check-in time and it was wildly better. She just woke up in the morning and had some water and we were off to the hospital before she could ask for breakfast.

3. During the Surgery, Try to Get Outside.

Hospitals, especially children’s hospitals, can be very depressing places. Sitting in a waiting room full of terrified parents is not going to help your own mental state. If at all possible, try to get outside of a walk and some fresh air. Most hospitals will page or text you when the surgery is almost over so you can make sure to go back in and be ready for recovery. Each of our daughter’s reimplantation surgeries took around 1.5-2.5 hours, though the doctor did warn that they could take up to 4 hours.

4. Do Not be Upset if Your Child Sleeps All Day and All Night After Surgery

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Coming out of anesthesia our daughter woke up for a few minutes – just enough time to let us know she was OK. But I was very concerned that our usually spunky girl went back to sleep and slept for hours and hours after her surgery. Anesthesia takes a toll on little kids and her body was fighting to recover and heal. I wish I had reset my expectations about her being awake for a few hours that first night so I could have been less worried and more encouraged that her body was doing what it needed to do to recover.

5. Ask for IV Pain Medication for the First Night

This was the most important piece of information we learned after the first surgery. For some reason, the hospital staff discontinued her IV pain medication several hours after her surgery and were trying to give her Tylenol by mouth. This was a problem for two reasons. First, she was half asleep and very groggy from the anesthesia so she was certainly not in the mood to drink pain medication Secondly, she wasn’t eating or drinking at all so the meds made her sick to her stomach. The entire evening was very traumatic and upsetting for this reason and it was completely unnecessary. On her second surgery, we asked for IV pain meds for the first night and it worked like a charm. She woke up the next morning and was able to eat and take oral meds no problem.

6. Avoid Tylenol with Codeine

Speaking of oral pain meds, one of the medications they used was Tylenol with Codeine. Because Codeine is an opioid, it can alter the way you think and feel. While adults may sleep better with this type of drug, it made our little girl very disoriented and upset when she was still coming off anesthesia meds. I would never recommend this medication for a child. Straight Tylenol seemed to be equally effective and much safer and more tolerable.

7. Stay Positive Through Setbacks

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Our first experience with surgery was as uneventful as it could be. Aside from some of the things we learned above, she did very well. We had her up and moving the next day and down to the wonderful playroom at the children’s hospital a few times a day.

We only spent two nights in the hospital and she was home recovering. The second surgery was much, much worse. She was unable to urinate on her own and had to be traumatically re-catheterized which required another small dose of anesthesia in the ER. She was ill from urine backing up a lot of her kidney function levels were way off.  It was a major setback and just terrifying. It bought us a few extra days in the hospital, but it was ultimately just a minor setback that quickly resolved.

When you are in the hospital with your baby or small child, it’s easy to feel like everything is bigger than it is. I learned that it’s super important to trust the doctors and medical staff. That said, there have been many, many mistakes made by doctors, nurses and hospital staff so it is important to stay vigilant about the details and be an advocate when something doesn’t seem to be going right.

8. Take Care Of Yourselves and Eachother

There were so many times during hospitalizations for severe kidney infections and surgeries where I could not bring myself to leave my daughter’s side. I would sleep right in the baby hospital crib with her (while I don’t think this is technically allowed, the kind nurses did turn a blind eye).

While this 24/7 devotion is possible in small doses it is not sustainable. If you are facing a lengthy hospital stay due to infection or complications from surgery, it is extremely helpful for parents to take turns tapping out and going home for a few hours to get some sleep or take a hot shower or even have a non-hospital food meal.

Having seriously sick kids is emotionally draining and us parents really need to find time to refuel and recharge so we can think clearly and be the best possible support systems and advocates for our children. Do not feel guilty about taking a few hours to sleep or walk outside or do some yoga poses or whatever you need to do to make sure you are taking care of yourself so you can take care of your child.

9. Get Them Up and Moving

The medical team will tell you that walking and moving after surgery is key to physical recovery, but I am a strong believer that it is also crucial to emotional recovery which aids in physical rehabilitation. When our daughter was too weak to walk after surgery or when she had been recovering from severe kidney infections, we borrowed a little wagon from the hospital and wheeled her around the floors and sometimes even outside for some fresh air and sunlight.

If you are lucky enough to have an operation at a children’s hospital, you can also ask if they have a playroom which can be a very welcome distraction if your child has been in bed for days. The other benefit is that all the children in the hospital are recovering from something, so your kid may see another little one with a cast or IV and having other little people to relate to can go a long way. Many hospitals do have playrooms or weekly activities, and others have a toy/game/video room to keep kids occupied and entertained while they are recovering.

10. Keep Up On The Pain Medication at Home

I definitely learned this the first time. We were giving Tylenol every 4 hours but tried to skip a dose overnight and it was not a good idea. After that mistake, we would wake our daughter up in the middle of the night for her meds and she would go right back to sleep. Each child is different, but we needed to give oral pain meds around the clock for about 5 days after we had been discharged from the hospital.

After a few days, we started gradually spreading out the doses by an hour or two here and there and after about a week she was really only needing pain medicine at night.

11. Use Your Time in The Hospital To Ask Questions and Plan For The Future

I’ve alluded to this before, but equal parts trust in medical staff and parent advocacy is crucial during the surgery and recovery process. It’s very emotional, so write down all of your questions and make sure you get answers from the doctors before and after surgery. In recovery, you may only see the surgeon once a day, but it’s still much more face time than you would typically get at quick regular outpatient appointments. Use the time to ask questions about recovery AND about next steps for the longer term.

If you are offered follow up tests while you are in the hospital, take advantage! As long as your child is emotionally and physically strong enough, being in the hospital cuts through the months-long radiology waiting lists and the bureaucracy and gives you immediate access to information and specialists who can talk you through the results in detail.

What am I missing? If you are a parent reading this and have been through surgery with your little one, I would love to share any other tips and or advice you have that could help other parents. Please feel free to comment or reach out to me directly.