So Chris, Kaitlyn and I left the little guy and headed to St. Louis. The night before the surgery we were sitting at dinner, counting the hours until surgery. Chris and I started to realize that Kaitlyn wasn't quite herself. She felt warm to us. The hotel we were staying at is attached the the Children's Hospital. So, at 8:00 that night we decided to see if we could find someone with a thermometer. We found a sweet NICU nurse, who put a temperature strip on Kaitlyn's forehead. Much to our relief, she didn't register a temperature. So, off we went to try to get some sleep. Kaitlyn and I were cuddled together in bed, when around 10:00 I touched her forehead, which was on fire. That led to Chris getting the concierge to take him to a pharmacy, where he bought a thermometer. Wouldn't you know it, her temperature was 102!!! So, we brought her to the surgical unit the next morning to confirm what we already knew. She couldn't have the surgery. We got back on a plane, and headed home to NC. Unbelievable.
For the next two months, Kaitlyn had to be kept in virtual quarantine. She couldn't risk being exposed to any other viruses. So, we had a very low key Christmas, then headed back to St. Louis for surgery on December 28, 2006.
The morning of the surgery was incredibly difficult. To hold your 2-year old smiling, happy little girl on your lap just minutes before she's going to surgery is very hard. She had absolutely no idea what she was facing over the next day, weeks, months and years. Before being taken to the operating room, she was given a mild sedative. I held her, and Chris and I walked her down the hall to the double doors, where we handed her over to the anesthesiologist. As he walked her to the O.R. we could see her looking at us over his shoulder. That is a look I'll never forget.
Moments before surgery.
Chris and I spent the next several hours in the surgical waiting room. The nurses would call us periodically to give us updates on her progress. The news was mostly good. She's doing well. She's just fine. Dr. Park is 1/2 way done. Etc.... Then, at one point Chris took a phone call from the O.R. He then reported to me that there were problems. They had discovered a massive infection, which they believed to be staph. WHAT??? As I was trying to process this new information, another nurse called Chris to the desk. It turns out that he picked up the wrong phone, and that message was meant for another set of parents. What a huge relief, but I still wonder how the other little girl made out.
We had been told that once Kaitlyn was out of surgery, she would be in recovery for about an hour, where we'd be able to see her. So, when we heard she was out of surgery, we anxiously awaited being called to the recovery room. Five minutes passed. Ten. Twenty. At that point Chris started pressuring people for some news. We were told that they were "having a hard time managing Kaitlyn's pain". One of the things Dr. Park's team is credited with is their ability to manage pain. They are top-notch in this field, so knowing that, how could this be happening???
We never got to see her in recovery. We were instead brought to the Pediatric Intensive Care Unit (PICU) over an hour later. When I first saw Kaitlyn, my intuition was to scoop her into my arms and comfort her, like I had done so many times in the NICU. However, she couldn't be touched, and certainly couldn't be moved. She was incredibly weak, and so fragile.
PICU
Little did we know that this was the start of a harrowing 24 hours. Kaitlyn was in an incredible amount of pain. She would get muscle spasms every few minutes. This caused her to shake, sending a bone chilling pain to the nerves that had been operated on. She would literally scream out in pain, something I had never heard her do. How could this be happening? I had asked a million questions of Dr. Park, his team, the surgical team, the PICU team and several parents of kids who had this surgery. The number one question for everyone was "How was pain managed?". The response I got from EVERYONE...No problem. Most kids actually slept for the first 24 hours after surgery. The kids are given a pain killer called Fentanyl that is 80 times more powerful than morphine. Again, how could Kaitlyn be in this much pain??? Through the rest of that day, and through that entire night Kaitlyn was in unbearable pain. They kept increasing the Fentanyl, but it wasn't helping. We had a hospital full of experts who could not figure out what to do. Around 1:30 the next morning, I couldn't take it any longer. I couldn't talk to the doctors, couldn't watch Kaitlyn suffer, just couldn't deal with it. Thankfully, Chris was on top of his game. He fought those doctors through the night. He wouldn't take no for an answer. He comforted Kaitlyn. He sang to her and fed her ice chips.
At 8:00 a.m. Dr. Park came in to do his rounds. Thank God. He's a man of few words, but when he speaks, people listen. He took one look at Kaitlyn, and said "Stop the Fentanyl". I couldn't believe it. That was it? I didn't get it. If she was in so much pain, how would stopping the super-strong pain killer help her? Dr. Park explained to Chris and me that Kaitlyn was having and adverse reaction to the Fentanyl. She was actually hallucinating (which I knew was true based on some of her overnight ramblings). By stopping the Fentanyl and switching to Morphine he felt that her pain would be much more manageable. It turns out he was right. By noon that day Kaitlyn was moved out of the PICU and sent to her room where she and I would stay for the next week. She was much more comfortable, and we wouldn't see that type of pain again. Thank goodness for Dr. Park.
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