My Son's Surgery

7/10/99

I wrote this to one group I am in, but then realized I wanted to share it with some other people. So I am putting it up here. It includes medical details relating to my 10 year-old son's eye muscle surgery and discussion of what my child's experience triggered for me, as well as some Christian issues.

The doctor was condescending and didn't explain enough at the pre-op visit on Tuesday and I was very angry about that. I had a strong gut feeling that we shouldn't go ahead with the surgery, but when I listened to that feeling what I heard was: "Don't let that bad man hurt him."

That seemed to be my own issues getting triggered; everything we had heard about this doctor was positive and he is board-certified in pediatric ophthalmology and has done more than 2000 of these operations. Maybe he wasn't giving us information because it is so trivial to him, but I was also angry that he wouldn't look at the larger picture of my son's other problems.

We had gone to another doctor for a second opinion and the other doctor said the same things, including "vision doesn't have anything to do with learning disabilities." Anyway, despite my anger and reservations, my husband and I decided to go ahead because we felt the doctor was technically good and we couldn't find any rational reason why we were making the wrong choice.

Wednesday, I took my son to the healing service at my church and he chose to go up with me and have the priest say a prayer for his surgery. Initially, my son asked me who I was going to pray for and I said I would pray for him. He responded that he would pray for his sister (who had gone off with my husband possibly to have baby teeth pulled, though it turned out that the dentist said the roots were gone and gave her a month to wiggle them out herself instead of having them pulled). I suggested, and he agreed, that he ask for a prayer for himself and I would ask for a prayer for his sister. I was very pleased that my son chose to participate. I don't know what it means to him; he hasn't said anything more about it.

We left our house Friday about 6 a.m. to arrive at the doctor's office a few minutes before 7. We stopped to give directions to the mother of the child scheduled before us--the directions provided by the doctor's office didn't say you had to go to a different door of the building so she was waiting on the wrong side of the building. My son read me jokes in the waiting room, but then he got very quiet when we went back to the prep area.

Some of the information the doctor had told me was wrong. For example, he told me my son wouldn't have to take off all his clothes. I also had one more negative exchange with the doctor. I had been worrying about something and decided I had to ask. I told the doctor that back in April, he said that he would need to modify two muscles in each eye, but Tuesday he only talked about modifying one.

His immediate response was "I didn't say that."

My husband backed me up and I explained that he said he needed to modify the second one because my son's eye turned a little up as well as out. The doctor then said that problem was so small it didn't need treatment, adding: "I thought you were talking about two lateral muscles."

At the pre-op visit on Tuesday, when I asked him about my son's report that his eyes were better, he denied that my son's eyes had changed significantly. Clearly the change was significant enough to change the plan for surgery. I get really triggered by this doctor not listening to me and not believing me.

During the prep, my son answered questions but didn't protest anything or say anything about his feelings. I asked if he could hold his favorite stuffed animal and keep it with him when he went back to surgery and they said yes. I found my son's passivity very hard to take. I think I felt like he was a child not protesting being abused. They gave him some valium-type medication that tasted awful; hopefully that helped him not be too scared when he went back to the operating room (we said goodbye to him in the prep area).

I was just kind of shut down while the surgery was going on. I was so glad that other people were praying for my son because I couldn't pray. I felt like the prayer I wanted to say was for God to protect my son, but I know God doesn't protect.

After about 45 minutes, they called us back and the doctor came out and said everything had gone very well. I think the surgery went exceptionally well. They told us my son's eyes would be very red and he would cry red tears and neither has happened (his eyes are red on the side, but not when he looks straight at me). His eyes seem straighter to me, but there is a lot of adjustment time needed, so we won't get even a preliminary reading on whether it worked for 6 weeks.

When the doctor talked to us after the surgery, he gave more reasonable answers to my questions than he usually does. It may be because it's the first time we have talked to him without my son present and he seems to be big on not telling children things.

He said my son may have trouble with his vision for awhile while his brain adjusts, but he said not to tell my son that, just reassure him if he reports it (since then my son has already reported it and I explained to him at some length about the brain adjusting).

After that, we waited the longest 15 minutes ever, until my son woke up from the anesthesia. The first thing he said was "get that stuff out of my eyes." He had no bandages, no nothing--he must have been feeling the stitches in his eye muscles. I tried to reassure him but there was nothing I could do to help his discomfort. He talked about the stuff in his eyes for awhile and then he got upset about not being able to wake up. I kept trying to reassure him that he should just rest with his eyes closed; he didn't need to wake up.

When he felt better, I asked him what was the scariest part of the surgery. He said when he first woke up and couldn't open his eyes. Nobody told us he wouldn't be able to open his eyes. It just looked like he had his eyes closed because any light bothered them. At first, I didn't understand that was what was upsetting him. I held him and told him "I'm right here with you" and that it was okay to rest, but he was clearly pretty frantic.

I brought his personal stereo for him with the tape he listens to at bedtime. He finally calmed down and went to sleep again. When he woke up, he was less upset, though still very miserable. What was bothering him most was the horrible taste in his mouth; sips of gingerale didn't seem to help at all.

We took him home, where he threw up and was just limp with misery. He then slept for awhile, "watched" TV (mostly curled up facing the back of the sofa). The tears were slowly but steadily running out of his eyes and he couldn't tolerate any light or curtains open. When I checked on him, he told me to go away (I think because I told him not to rub his eyes and he wanted to be able to rub them--he wasn't doing it badly). He tried to eat and got hit by another bad wave of nausea, though he didn't throw up. Then he 3 hours of solid sleep. When he finally woke up, he felt better.

I left a message for my parents when we got home and when they called back they wanted to hear all the details (mostly from my husband). I'm disappointed they didn't call us the night before the surgery or send my son anything. They are busy with an event they are helping organize this weekend. I went out and bought my son a stuffed raccoon, and he was happy with that. His sister (who spent the night with a friend) and the kids in his summer program made him big cards, and when he woke up from his long nap he was very pleased with those.

The rector of my church had promised to come by and visit. Friday is usually his day off, but he had to attend new student orientation in the morning. He called and I told him my son wasn't feeling very well and he said it sounded like it was better if he didn't come (I felt like he really wanted to have some of his day off).

I wasn't able to say I needed him to come, though he acknowledged that it probably triggered a lot for me. I did say I needed to talk and I was able to tell him on the phone some of the things I was upset about. I was very disappointed; I really needed to start talking about the bad stuff and I had been looking forward to his visit.

I found another way to meet my need. My husband tried one friend of mine who wasn't home and then I called the friend who was keeping my daughter. She asked me how I was doing and I said my reaction was hitting me. She asked if I wanted her to keep my daughter longer and I was actually able to say "I need to talk."

My son was asleep at that point, so I left my husband to mind the fort and went over to my friend's house and talked to her for awhile about my feelings. It became clear that I have a lot of child-like feelings that don't understand about doctors and I see the situation as not being able to protect my son from abuse. Later on my therapist called and I was able to tell him also. He is going to call me again tonight.

next day:

Today, my son is himself again and I feel like it's over, but yesterday was really, really bad. I felt such overwhelming horror about my son being in so much pain and misery and I couldn't protect him, couldn't make it go away. I guess when I was a child, the protection I longed for was not just someone who would comfort me, but someone who could magically make all the bad stuff go away. It is scary just to write that. I also feel that as I comfort my son, and hold him, and am there for him, I am giving him something I don't have and I get more-and-more hollow and empty. Today, he doesn't need me that way anymore. Yesterday, when he did, I felt a kind of satisfaction in destroying myself for his sake.

The triggering situation is over, but it leaves me with lots of feelings to deal with. Scary, scary stuff.

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