Do you remember last 4th of July? What were you doing? I was camped out in a hospital room on 7C of Children's Hospital, Medical University of South Carolina. It was a miracle I was even there.
Two weeks prior, Tommy had come to the hospital for a routine heart cath in preparation for his Glenn reconstructive surgery. It did not happen that way. Instead, we would learn that day that he was no longer a candidate for the surgery due to chronic lung disease. We were so devastated! Here was my tiny little guy getting more and more blue as each day went on before the heart cath. His sats were very low when we were admitted that day, between 44-and about 66%. (normal O2 sats in a healthy person are 100%) Tommy was getting very sick, his shunt was no longer big enough for him and he could not have the Glenn. I was told he would be weaned down to 35% O2 and be sent home to wait it out on oxygen. I asked the doctor that day how long my baby had to live with his current shunt. One month. A death sentence.
Tommy was admitted to the Pediatric Cardiac Intensive Care Unit (PCICU) at that time. He was originally going to be admitted to "the floor" (7C step down unit) but because he had to be sedated and paralyzed for the cath, he needed ICU care until he came out of the sedation. This isn't typical of a heart cath, but Tommy's heart is so unique, it made getting his pressures very difficult. He was on about 40% O2 with sats in the low 70's, mid to high 60's. When he was weaned to 35%, he desatted. My heart was breaking. Rob and I actually discussed funeral plans! Tommy was only 9 months old and I was preparing myself for the worst. I told the Fellow that was on call in the PCICU that night that I was just not comfortable with the idea of sending him home for me to watch him go into cardiac arrest and die. I asked her if we could do another shunt. She gently told me with his numbers, he may not live through the surgery.
4 days passed. They were so long and depressing. Tommy was moved to a private room in the PCICU. I spent my days and nights catching naps on a chair beside him when he slept and talking to him and spending every precious moment I could when he was awake. I took so many pictures. The Fellow had passed on to me that Dr. Bradley (Tommy's surgeon) was considering Tommy's case very carefully. Every day he would pass us during rounds and give me a gentle smile. A reminder he was thinking about us, but had not come to a decision. I cannot imagine the weight on his shoulders. Every day, he must make a decision to save a child's life. This time, it just happened to be mine.
Finally, the day came when he stopped in our room. He said he would attempt to do the Glenn. It was not without risk. If his lungs could not tolerate the pressure, Tommy would go back into surgery to have it taken down. Then we would be back to square one. We discussed the possibility of upsizing his shunt if his pressures were not good once Dr. Bradley had begun the procedure. Tommy was scheduled for first case the next morning. I took a short nap until about 3 in the morning, then returned to his room to help with preparations to take him to the OR at 6. My favorite memory during that time was that Tommy was given Versed to calm him so that his nurse could start an IV. Tommy got the giggles. Even as the nurse was sticking him, he laughed his little head off. It was nice to see him like this, knowing in a few short hours, his life would be in jeopardy as Dr. Bradley made that first incision.
Tommy ended up having his shunt revised to a slightly larger size. During the surgery, I was given a pager and got text alerts on the hour about how surgery was going. Originally, the information given to the nurse handling the texts was told Tommy was having the Glenn. We didn't know until surgery was over that he didn't. Dr. Bradley told us he started the Glenn and announced as such, but as he did the surgery, things didn't look good, so he went with the shunt instead.
Tommy spent about 4 days in PCICU after the surgery and moved to 7C. I watched the fireworks from his window that night thinking Independence had a whole new meaning for Tommy. He was free from the death sentence that had hung over our heads for those several horrible days. He went home a couple of days later on 30% oxygen that was later bumped to 35% which he is still on today.
One year later, Tommy saw his cardiologist yesterday. Once again, we discussed Tommy having a heart cath and the possibility of surgery. There are no answers yet. It might be a couple of weeks until I hear anything. Tommy is doing very well. Today will be the first time he ever sees fireworks. What a bittersweet moment it will be! Every day of Tommy's life is a fight, but he makes it look so effortless. He is my miracle.