Oh, the ignorance of my parenting. I should have known things would not change as easy as it seemed.
C was terrified with the concept of this surgery. He did not want an extra hole in his body. The Fear of the Unknown plagued him. He spent nights awake out of fear. We spent days trying to talk it out, explaining how wonderfully easy the surgery would be for him, how much better he would feel when it was done and his body could heal, how much happier he would be out of pull-ups and into regular underwear.
It was the beginning of July when the hospital called. We finally got a surgical date for Mr. C. and it was only 2 weeks away! Plans were set in place, arrangements were made. Before we knew it, the week of surgery came. I drove, along with my mom, the three hours to the hospital. After a couple of nights awake, C was tired, and it was not long before he was asleep in the car. We stopped for a bite to eat around lunchtime but could not rouse him.
After lunch, we had to take C to take a COVID test before the hospital would admit him. We found the testing location and drove up to the line. A nurse in full bio-hazard gear approached to confirm our identity then went back to the shade of their tent to grab his test. C was still sleeping fairly sound. I talked to him, attempting to wake him; his eyes fluttered but he was too drowsy to wake. At the nurse’s request, I climbed into the back seat to help hold C still while she gathered the sample. She pulled out what, resembled a long-handled mascara brush or miniature bottle brush. This could be bad. Having sensory issues, he is particularly sensitive with his nose; he will not blow it, just wipe, and gets frequent nose bleeds. She explains how nice and quick this test is and proceeds to shove the brush (aka Daggers on a Stick) up C’s nose to the back of his sinus cavity and twirls it around for 10 seconds. He woke with a start and jerked his head back, crying about how it hurt. I had to hold him down, restraining his head and he’s now screaming, Nana is crying (it’s torture to watch this happen) and I’m trying to keep it together; this was the longest 10 seconds of my life! Finally, the sample is gathered and we are sent on our merry way. C was wide awake after that. He explained how much it hurt but didn’t overreact as he has been known to do. He was amazingly brave.
We find the hotel that the hospital provided for us and check in. It’s mid-afternoon and we have no where to go.
It is strange traveling during this pandemic. You can mask up and sanitize and still go out in public. However, if you are immune-compromised, elderly, or about to have surgery, you’re advised to avoid going out. With C and Nana, we struck two out of three on that list and needed to remain in our hotel room for the duration of our stay. No going to the pool, no hanging out in the cozy lounge off the lobby, no eating in the restaurant. We settle in for a long evening of tablets and television. C was perfectly happy. It was harder for the adults.
Another fun day one activity was the administration of pre-surgery antibiotics. At three specific times, C had to take two different antibiotics which were known to make some people nauseated. They, of course, did make C feel horrible and, on an empty stomach because he slept though lunch, he was miserable. When the restaurant opened up for room service that evening, we ordered food and hoped that would help. Unfortunately, C had fallen back into a restless sleep. You could see on his face that he was having stomach cramping. He slept until 11:00 when we had to wake him for his last dose of antibiotics. He didn’t want the food we had ordered for him, but I was able to get him to snack on some crackers, which helped avoid more vomiting. He stayed awake again all night.
On day two, we checked into the hospital and were rapidly taken to a room to be processed. The hospital felt so empty; it was weird. In the surgery prep room, C’s fear really skyrocketed. The poor kid was terrified and just wanted to go home. We met the nurses and the surgeon, and one of the last to come in was the anesthesiologist. He was an older gentleman, and we were his last patients of the day. He spent a lot of time trying to talk to C and calm his fears. He noticed C’s anxiety and suggested that I could go back with them to the operating room and be with him until he fell asleep from the sleepy gas. This was good, and C accepted the offer but, I was frustrated because the surgeon and I had previously made other plans. The anesthesiologist must not have read the notes. This was my first hint that the day was veering off course. My plan with the surgeon had involved pre-medicating C with an anti-anxiety medication that would calm and relax him, making the whole process easier on the kiddo. He typically doesn’t react well to anesthesia and that was just one more thing to be afraid of.
The time came to walk to the operating room. C was finally resigned but was encouraged that I would be there with him. He walked with the nurses down the halls to the room, the doctor and I trailing behind. He’s very mechanically inclined and, in the OR, he was fascinated with everything, asking questions about what things were for and how they worked. He amiably got on the table and cooperated with everyone. I was so proud!
Time for the gas. He was given the option of different scents for the anesthetic gas to make it smell more pleasant. The gas itself had a somewhat unpleasant smell along the lines of gasoline. C asked for one scent after another but found them all too strong for his sensitive nose. At this point the anesthesiologist is irritated and dismissive of C’s gagging, insisting that he was just trying to get out of the surgery. I tried to explain C’s sensory issues, his strong gag reflex… only to be ignored. I may have been allowed in the room, but I was not listened to. This “doctor”, annoyed and, presumably, ready to be done for the day, forcefully held C’s head still, encouraged four or so nurses to hold him down, had one nurse turn the gas on full, and shoved the mask onto C’s face until he passed out. I was shocked beyond words.
I felt like a failure as an advocate. The surgeon and I had a plan to make this as easy as possible, but it was ignored. Maybe I should have run over to this man and yanked him free of C, chewed him out perhaps, telling him to read the bleeping chart, that he was working with a special needs child. But I just stood there, shocked that this was happening.
In moments, C was asleep, his lips slightly blue. I was told to kiss him goodnight and leave the room. I leaned down and kissed his dry, blue lips, tamping down the feeling that he was dead. He sure looked dead. I followed the nurse back to the prep room where we had left Nana and our things, and I lost it. I cried at the injustice of it, my feeling of helplessness, and the fear that C likely experienced. After a while, I pulled myself together, held my head up high and walked into the waiting room. Now I was livid. My tears had turned to steam! How dare this happen?! I am C’s advocate. If he can’t or won’t speak up, then I will.
Nana and I wandered the gift shop, and then headed back down to the waiting area. There, I called my husband and relived the trauma of seeing our son forced to sleep. He was livid too and agreed that I needed to speak up. Our son may be past the point of no return with this “doctor,” but we could not let that happen to someone else’s baby if it was within our power to help.
When we finally saw the surgeon, I was pissed off, however, I knew she was not the one at fault. I calmly explained how unhappy I was with what happened, asked and answered questions, and was finally satisfied that she would deal with said doctor.
Thankfully, the surgery went well, but C took a very long time to wake up. Poor kiddo woke up about 9:30p and was awake until about 4 or 5 am. Once we were settled and quarantined in the room with him, we realized how exhausted we adults were. C was fine, entertaining the nurse, making suggestions on how to provide his care, and watching shows on his tablet. The next days were a bit monotonous. C was doing great, having only light pain which kept him off narcotics and on basic pain killers. He ate well and healed well. Two days after surgery we were sent home.
C was happy, feeling good and things seemed on an even keel. We were told to wait a week before we used the port or let him bathe or shower. All was well until he woke up in the middle of the night a day later, vomiting. After vomiting for almost 24 hours, every couple of hours, unable to keep anything down, we made the decision, along with the surgery center, to take him to the local ER. Thankfully, his surgical site was perfectly fine and he had no fever. When his vitals were taken his blood pressure was high and his oxygen a bit low. Of course, my worried mind goes straight to the what-ifs, but completely unnecessary; it was determined that C had gastroenteritis coincidentally. We had gone straight home from the hospital when he was released, and nowhere else. Where he caught a stomach bug is beyond me. The good news was that, after he was treated for dehydration and given some anti-nausea medicine, we were allowed to go home later that night.
C appears to be great these days, physically. Mentally, he is taking everything in. He has no memory of the trauma with the anesthesiologist (thankfully), but having surgery for the first time, and having your body physically changed takes a toll. He’s needy and emotional, but I don’t mind. Right now, I’m soaking up the hugs and snuggles. I know that, one day in the not too distant future, he will not ask so often for hugs and snuggles. I will miss these days.
Wait you think that’s the end? Oh no! Now we address the fact that everything seems to overwhelm C now that he’s processing all that he’s been through. He’s terrified again, this time about using his new port. He is afraid it will fall out, something will leak out, or something unknown will go horribly wrong so refuses to cooperate with us in using it. We have been trying to work with him each day; talking about things, try to reason with him. Maybe he just needs extra time to process the new sensations and become brave and use it. Maybe not. He has stated it hurts less as the days march on.
For now, we are happy with baby steps, continuing his previous regimen to keep him regular, and continuing to build his confidence. Aside from the refusal to move to the next step, he is doing well. I doubt we could ask for much better than that.