Friday, January 22, 2010

Tommy's Story~His Heart

On the morning of October 20, 2008, Tommy was one month old. I called the Cardiac step down to talk to his nurse about him to see how he did through the night and how he was feeling, since he'd had the botox and was in a new place. She told me he was a little fussy and she had him in the nurse's station in a swing. Awwww! His first time in a swing! I was more sad I was missing him be fussy than being in the swing. He was a quiet baby and I think I had only heard him cry once or twice since he was born.

The afternoon went on and the phone rang. Tommy's nurse said that his sats weren't that great so they were going to give him a little morphine to start an IV. She made it sound like everything was okay, he just needed a little fluids. Being a new heart mom, I didn't really know what to expect or what was actually happening. The phone rang again a short time later. Again, it was the nurse. Tommy had an adverse reaction and his breathing became very shallow and they were giving him medications to reverse the morphine. She said to expect his heart surgery sooner than later and that Dr. Bradley wanted to speak to me about it.

It would be about a year later while Tommy was admitted for one of his many stays that we would have the same nurse. She would tell me what she couldn't tell me that night. Tommy had crashed and they almost lost him. It was much, much worse that I had ever been led to believe.

Dr. Bradley got on the phone and we talked for about 10 minutes about what was happening with Tommy. We discussed how the surgery worked and how he would be doing it. Lots of chit chat on my part. Just being an informed mommy. He asked me for consent, which I gave. Cool, just getting it all in order. I asked him what day he was doing surgery. He said "We start at 6". I looked at my clock. It was 5:20!!!! I hung up, numb. I called Rob. No answer. I called my best friend. Her phone was messing up and she couldn't hear me. I was shaking all over and ready to cry.

Rob worked for a company that installs fire alarms. They worked in the field all day long and the office closed at 4. I said a silent prayer and dialed the office anyway. I let it ring and ring and ring. Finally, somebody answered. Through tears I tried to explain who I was. I told them Rob wasn't answering his phone and our son was about to go in for emergency heart surgery. I told them he was with John. Turns out there were several Johns working there. I narrowed it down by describing what I knew about John and they figured it out from there. I could hear the man I was talking to start speaking to someone in the background. They managed to find John's cell number and call him. Through the four of us, Rob got the message to come home. Now.

They had been about 30 minutes out of town on the side of the road with a flat tire. When Rob got on the ground to change it, he had bumped his phone and caused the sim chip to come loose. Once he had it fixed, he called me and I told him what was happening. I would later find out all they had told him on the phone was to go home and take off as much time as he needed. That was all. I made it to the hospital around 6:30. I never got to see Tommy, he was already in surgery. Rob took the kids to my friend's house and she was supposed to meet me at the hospital, but her husband was running late getting home with their car, so everyone was just stuck where they were.

I went to the PCICU and was taken to their waiting room. It was after hours so Guest services had left. I was instructed that all updates would come to the phone in that room, and was left completely alone. Completely Alone. No support. Nobody. Just a few magazines and my thoughts. My son was having open heart surgery, I didn't know what was happening, Rob was taking care of our kids, my friend was waiting for her car and I was in that room where the quiet was so loud it hurt my head.

I remember getting a couple of updates, but don't remember much. I was in shock. Around 8, my friend finally made it. She had brought food with her. I had forgotten I hadn't even eaten since early that morning. I was about to make dinner when the phone had rang at home. There were signs all over the room stating "no eating", so the food sat. Finally around 9, we got an update that he was doing well, so I took the chance to tell the nurse on the phone that we would be going to the cafeteria to eat for about 30 minutes so we wouldn't miss any more updates.

We went to eat and I felt so much better that I had gotten a good update, had a full tummy and someone to lean on. We went back upstairs to the waiting room. The door was locked and the lights were out! I barely knew the hospital, didn't know where to go, who to call and was in a panic. A security guard that I had become friendly with walked past. I told her Tommy was in surgery and had been told to wait in that room. She opened the door for us. I was so grateful to her! About 10 minutes later, the original woman that had left me alone in that room came flying in screaming at us! The waiting room CLOSED at 9 pm and we were NOT to be in there. That was it for me. I'd had enough. I told her that until my son was out of surgery, I was not leaving. She told me to go to the adult waiting room down the hall. I refused and she stormed out.

I got a phone call shortly after telling me that Tommy was having a hard time making it off the heart lung machine and they were going to try another pass. Heart lung machine? This was serious! It hadn't even crossed my mind he'd be on bypass! An hour later, she called back to say he was fine, on his way back to PCICU and Dr. Bradley was on his way to speak to me. Crazy lady came to try to kick us out again and I told her Dr. Bradley was on his way. She told us fine, but after we spoke to him we HAD to leave. Whatever, Crazy lady.

I don't remember much about what Dr. Bradley said to me, except he looked very unsettled. My friend said he just looked tired. It looked like concern to me. I do remember him telling me that the first two days were critical. All I wanted was to see my baby. He was 5 pounds, 4 ounces, one month old and had just spent the last 5 hours having open heart surgery on a heart the size of a grape. I wanted my son! I was told they were getting him settled, it would be about 45 minutes.

As we left the waiting room to head down the hall to the adult ICU waiting room, the doors to the PCICU swung open as we passed. I saw a baby surrounded by several people, covered in lines and wires. I felt like I was looking at something I was not supposed to see and hurried past. 45 minutes dragged on and we were finally allowed in to see him. The baby I had seen had been mine. It was my son covered in lines and wires, still surrounded by people. Dr. Bradley sat by his bed observing everything. I was impressed! The surgeon who had just saved my son's life sat next to him like he was an old friend watching over him and protecting him. Amazes me to this day.

We scrubbed up and walked into the PCICU for the first time. Tommy was sedated, paralyzed and on a ventilator. He was covered to his chin with a blanket. His nurse explained everything to me. What every machine did, what every line meant. I asked how his stitches looked. He didn't have any. His poor body was so swollen that he had a dressing over his open wound. Once the swelling went down in a few days, they would close him up. I am not one to shy away from anything and I asked to see. She pulled back the blanket.


My son's heart beat before my very eyes beneath the yellow iodine dressing. I couldn't see the actual heart, but I did see the beats. Wow. I knew in that moment, looking into my son's chest that we could face anything. There would never be anything so wondrous as being in that moment. I became so strong for him right then and there.

The easy part was over. Now we would face the recovery.

1 comment:

saywhatyouwill said...

thank you for sharing so much, rene.
very moving.

Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries