April 24, 2018. Surgery Day. Nerves and excitement all rolled into one emotion as we headed to the hospital early that morning. Max was going to have surgery to get her ostomy taken down. It came quickly and slowly all at the same time. The thought of another surgery was scary, but also exciting that she wouldn’t have to live with the ostomy anymore. The nurse-mom in me was starting the internal tug-o-war again as we were heading back, to the other side.
Preparing for Surgery Day
As the surgery date approached, we went over logistics and made preparations for Max’s possible week long hospital stay while planning to keep things as normal as possible for Scar. We agreed that I would stay with Max for the majority of the time in the hospital and we would enlist the help of our family to get Scar through the days, and Josef staying with her at home in the evenings.
This time around seemed easier to plan as we learned a few lessons from Max’s first surgery and hospitalization. The main thing we focused on was that we couldn’t expect Scar to spend the majority of her days and evenings day after day in a hospital room. She’s (almost) three years old and will go crazy if she is confined to a hospital room for more than a couple hours, and even a couple hours is pushing it some days. So we arranged pick ups and drop offs with our family who graciously offered any support they could give us.
We arrived at the hospital at 6:30 a.m. as instructed and made our way to the registration area. We checked her in, received our parent ID bands, signed some papers, paid our co-pay and went to the waiting area. Shortly after they called us into to the pre-operative holding area.
They weighed her and I changed her into a little hospital gown. The nurse said the anesthesiologist and surgeon would be by to answer any last minute questions. My first thought, I’ve been working at this hospital for almost three years and I don’t think I’ve been here. Seeing familiar faces from the pediatric surgical team did ease my tension a little bit. They the same team that cared for Max when she had her first surgery.
It was now 8:00 a.m. and the time had come to roll her to the operating room. We took a few turns here and there and then it all became familiar. I saw the same double doors they wheeled her through in an incubator the day after she was born. The same faces taking her in and assuring us they’d keep us updated and take good care of her. We gave her our hugs and kisses and waves as the doors closed behind her.
Now all we could do was wait. And pray that everything goes well.
The waiting game
While eating breakfast at a local cafe, Josef and I passed the time talking about anything and everything–food, business, work, Scar, Max. While trying to focus on our conversations, which at times come too far and few between work and home life with two young children, I found myself starting to play the worst-case-scenario game in my head. By some divine intervention at this exact moment, the text messages started coming in. Kind words, thoughts and prayers and some most needed distraction techniques from friends and family got us through the next three hours. I received a call at 8:45 a.m. from the OR nurse. She told us everything was going as expected and they would continue to keep in touch. We finished our breakfast, picked up some sweet treats for the nurses, then headed back to the hospital to wait in the cafeteria.
It was probably about 10:30 a.m. now and we had yet to receive another call. Anxiously waiting for any news, I kept checking the patient status board to see if there were any updates. Patient in Operating Room. Finally at 11:15 a.m. the surgeon herself calls me and tells me that the surgery was done. They were waiting for an x-ray to check the placement of Max’s epidural which would provide her pain relief for the next few days. We would receive another phone call when she was being transferred to the Pediatric ICU for recovery. An hour goes by and still no call. Now I’m starting to worry again.
It’s 12:30 p.m. now and the surgeon calls me and says she’s up in the PICU; the anesthesiologist had to redo her epidural which is why it took so long. We got to the PICU and she was still drowsy from the anesthesia, but at least she looked comfortable. She only had one IV this time but they also had to put a tube in her nose to suction her stomach until her bowel function returned.
The next few hours went by without much incidence, so Josef decided it was a good time to go home and pick up Scar. As soon as he was going to leave Max starts fussing and getting extremely uncomfortable. “Oh no, what did we do?” The mama guilt started setting in. “The surgery was elective, she was doing fine at home with the ostomy, why did we put her through this?,” I started asking myself.
Thankfully the night shift nurse that first night was AMAZING! I hadn’t met him before, but I’m so thankful that he was Max’s nurse that night. He literally did not leave her side for the first half of his (12 hour) shift. Watching his critical thinking process and assessment skills put my mind at ease. At that moment, I finally felt like I could relax and just be mama instead of playing the nurse-mom role.
She was in the PICU for a couple days and then was transferred out to the pediatric ward, which was also the floor I work on. The number one question I was asked was, “How is it being on the other side?” Since this was Max’s second surgery and second time in the hospital, I’d say it was a little easier in that we knew what to expect in terms of bouncing between the hospital and home. And also, I felt a lot more comfortable since I knew all of the nurses and doctors. She did very well the first four days and by the end of the week Scar was asking me to stay home with her and I felt comfortable enough to go home while Josef stayed at the hospital with Max.
Another set back
In true fashion, the next couple of days were not so good; cue Murphy’s Law. She couldn’t keep any food down, her IV went bad and her foot got swollen so they had to take it out. This also meant stopping the epidural a day earlier than originally planned since she had no venous access. Her pain seemed very well managed at least, but the vomiting started to concern the surgeon. They did an ultrasound to see if they could find a reason for the vomiting but didn’t find anything abnormal.
By the time I got to the hospital it was about noon and she was still not holding anything down and she had no IV. She has small veins like me, so they decided to place a PICC line and start her on special IV nutrition and fats since she hadn’t eaten for pretty much a week.
Feeling discouraged doesn’t begin to explain what we were feeling. We thought she’d be out of the hospital by now, but instead she was getting more anesthesia and a new line placed. Of course by that evening when we decided that I would stay with her that night, she rounded the corner and started holding down some pedialyte.
The next morning we tried some of my milk and she did really well except for one little spit up. The IV nutrition was turned off by the afternoon and she was able to breastfeed again. We opted to stay one more night to make sure she did okay overnight. Without any other road bumps that night, Max was discharged early on Thursday morning, May 3, 2018.
Returning to home life
Being on the other side for the second time reminded my good ol’ nurse complex to not try to control things that are out of my control. And honestly, it was much easier to do this time around. Max definitely made it easier by showing her incredible strength again through it all — hardly complaining and being able to sleep well while being in the hospital.
As I prepare to return to work, I do believe that these experiences will make me a better nurse. I’ve been a pediatric nurse for almost 11 years now and I can admit that I have probably become somewhat desensitized to seeing sick children in the hospital. While some people have computer screens and telephones on their desks every day at work, I have IVs, blood draws and medical procedures flowing around me on a daily basis.
A New Perspective
However, I now realize that it wasn’t until just about 5 months ago that I could honestly say to my patients and their families, I understand. I understand the fear and worry that takes over you when your child is in the hospital and how frustrating it is to not be able to take your child’s pain away. I understand that a mere five minutes of waiting feels like an eternity. And I understand the feeling of losing control.
Yes, I have always given my compassion and offered all that I can to comfort them in their time of need, but now I actually get it. I’m looking forward to taking all that I’ve learned these passed few months and applying it to my daily work flow. If I can make just one patient and family feel that much better by sharing my personal experience, I’d say it was all worth it, being on the other side.