Steve
 When my son Steven finally went in for surgery to correct an ASD, he was 2.5 years old. I say "finally" because his surgery had been canceled twice before; once due to him having RSV and then again because of the "Blizzard of '96." The postponements were very hard on me. It's emotionally draining preparing yourself for your child to undergo open heart surgery , and when it had to be postponed the second time, I actually broke down and cried. All I wanted was to have the surgery over and done with, so we could go on with our lives not having to worry about it anymore. The day of Steven's third pre-op exam, I prayed all the way to the appointment, all the way home, and didn't stop until we got a call saying he had been cleared for surgery.
As for Steven, he didn't know any of this. Since he was so young, my husband and I decided that it would be fruitless trying to explain anything about his pending surgery to him until the night before we were to go to the hospital. We had, however, told him a number of times that he had a "boo-boo" in his heart. So, before Steven went to bed the evening before his surgery, I told Steven that the next day we would be going to the hospital. (I don't think he had any idea what a hospital really was, though). We told him that he would go to sleep for a while and the doctors would fix the "boo-boo" in his heart and we stressed that mommy and daddy would be there with him. We limited what we told him to what we thought he'd be able to understand.
While Steven didn't require much explanation, his older brother, Jesse did. Being 4 years old, Jesse was well aware of the postponed surgery dates. So, the whole ordeal was rough on him as well. (In fact, he was stranded at his grandfather's house after the second postponement because of the blizzard!) Jesse started asking questions about Steven's heart not long after the ASD was diagnosed. We don't keep secrets from our kids, so even though he was only about 3 years old, I explained to Jesse that his brother has a hole in his heart and that someday he'd have to go to the hospital to have it fixed. As Jesse got older, he asked more and more questions until, at 4 YEARS OLD, he asked me how the doctors were going to fix Steven's heart. I decided it was best to tell him the truth: "The doctors will give Steven special sleeping medicine and use a special knife to cut his chest open to fix his heart.", I told him. At first, Jesse was afraid because he thought it would hurt
Steven. I explained that he would be given special medicine so he wouldn't feel anything. I caught Jesse trying to explain this to Steven a couple of times and had to intervene, so Steven didn't get scared. Jesse showed off his knowledge any chance he got: to neighbors, relatives, friends, anybody who would listen. I think knowing what was happening/going to happen made him feel "grown up".
When we went to the hospital the morning of surgery, we took along Steve's favorite teddy bear and his Barney sleeping bag -- something he absolutely had to have in bed. We got to the hospital about 45 minutes early, so we let him ride up and down the moving walkways between the garage and lobby. He also had a chance to run around the HUGE lobby and climb on the benches. We basically let him do what he wanted and he had a grand old time! Just watching Steven have so much fun helped me relax a little bit.
When it came time for us to hand him over to the anesthesiologists at the doors leading to the operating room (it was the hospital's policy not to allow parents to go with "cardiac patients" when they were put under), I think Steve just figured he was going for a check-up or something. He looked a little confused as to why mom and dad weren't coming, but he went quietly and, from what one of the doctors said, he actually got to play with some stuff and was in good spirits before they put him under. Of course, I didn't find this out until after Steven was in the ICU, but it put my mind at ease to know he wasn't "freaked out".
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During the surgery, we got periodic updates from the nurse in the OR; like when they put Steve on the heart-lung machine, when they took him off, when they closed him up. Time seemed to crawl.
My husband and I spent most of our time in the ICU waiting room. Although my in-laws were there, it didn't make much difference; I was in my own little world. I had brought a needlepoint project to do, and while it kept my hands busy, I really don't remember actually doing it. I kept thinking about the bath I had given Steven the night before: I had washed his chest a little longer than normal, realizing that the next time I did it, his chest wouldn't be as smooth. To be honest, I was never anxious about the surgery itself. I had complete confidence in the doctors and the hospital. I was more concerned about Steven's recovery and how to make him as comfortable as possible during recuperation.
When the procedure was complete, the surgeon came to talk to us. He showed us pictures he had drawn of Steven's ASD (there were a few more holes than anticipated) and he gave us a baggie containing the left over patch material that was used. (My husband has shown that material to anyone who stood still long enough!) Finally, we were allowed into the ICU to see Steven. The one thing that shocked me was his color: He wasn't gray or blue-ish as a lot of people had told me to expect. He looked fine...that is, if you didn't pay attention to the myriad of tubes, bags and restraints. For me, the worst thing about Steve's
24-hour stay in the ICU was that every time he heard my voice, he would whine and try to wiggle out of the restraints. It made me cry because, while I could sit with him, I couldn't let him know I was there. All I could think was, "He probably thinks I have abandoned him!" But, it was obvious that if I said or did anything to let him know I was there, he would have pulled a tube out or something.
When Steve was transferred to the cardiology floor, I found out the hard way that I had to be my child's advocate. The nurses were more concerned about getting everything done in a rush than about my son's comfort. There were some things I felt simply didn't need to be done when the nurses wanted to (like changing Steven's diaper at 2:30 am, after he had finally fallen asleep). For the first 24 hours out of ICU, Steven was very moody. I could tell when the pain meds wore off because he would start to whine and couldn't be consoled. There were a few times I had to try and find a nurse to administer more medication.
When we snuck Jesse in for a visit, it did them both a world of good! (Hospital policy didn't allow visitors under 12 years old, but we knew the two of them needed to see each other.) Even though Steve wasn't in the mood to hug his brother, I could tell that he was truly glad to see him. We even let Jesse go to the toy store and pick out a few "Get Well" presents for Steve. That made him feel like he was actually doing something to help his little brother.
Steven was only in the hospital for 3.5 days. When he came home, he didn't want to take off his hospital gown! (It's just as well...another "souvenir"). He refused Tylenol except when he really ached, and didn't want it at all after a couple of days. He didn't have his "whining spells" after coming home, either. I don't know if it's because he felt that much better physically, or if it was more emotional. His appetite was good, but he was very picky. For the first day or so, all he wanted was chocolate milk, cheese and grapes. My husband and I catered to his desires as much as was reasonable.
Steven's recovery was pretty amazing. After 3 days at home, he wanted to do a lot of things that I wasn't ready for, like riding his tricycle! Within 2 weeks, though, I had relaxed a little and he was
allowed to play in the wading pool in the back yard and, yes, ride his trike. Now, 7 months later, his scar still itches sometimes, but the only time it hurts is if he bangs it on something. Amazing!
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