Tommy was admitted to the PCICU. There had been talk about sending him home on oxygen if he could be weaned down to 35%, but he never did manage to get down that low. His sats hovered in the 60's while on 40% oxygen. He was lethargic and blue. I finally told his nurse I wasn't taking him home until a decision was made and a plan worked out. I stayed with him night and day, sitting beside him, talking to him, whatever I could to be close to him. I slept where ever I could find a reclining chair or on the couch during the day when the Ronald McDonald Room was open. Once, I tried to sleep on the floor of the chapel because there was nowhere else to go.
I lived barely 10 minutes away. I could have slept in my own bed every night, but I could not leave him! Every day, the doctors rounded and I watched Dr. Bradley (his surgeon) walk by us. I asked the nurse when he was going to decide what to do about Tommy. She said that Dr. Bradley does not make decisions lightly. He considers every possible outcome and will not just jump into it unless he was certain. She assured me he knew how sick Tommy was, and that he wasn't ignoring me. Our second day on the floor of the PCICU, Tommy was moved to a room instead of just a bed on the ward. He didn't leave the floor, or even the PCICU, just where he was sleeping. It meant I could watch tv, and have a bathroom instead of leaving the ward and coming back. After 4 days of only leaving his side when it was absolutely necessary, Dr. Bradley walked into our room on Thursday morning.
He said "Let's try the Glenn." I thought his lung pressures were too high, but he told me Tommy had been on medication for 4 days and there was the possibility that his pressures could have come down enough for the surgery to be successful. I had a lot of questions, but the big one was what happened if the surgery didn't work. The answer was easier than I thought. He could reverse the surgery if it wasn't working for Tommy's body. Really? I had no idea that was possible! So at 5 a.m. the next day, Tommy would be headed to the ER. And I would be alone again. I could not bear the thought!!!
I had become close with another mom in South Carolina who's daughter had the same surgeries as Tommy. She told me that day if I needed anything to call her. So I did. I told her I didn't want to be alone during his surgery. She made the arrangements and said she would be there. I was so grateful and I am to this day. She inspired me and gave me a reason to think everything would be fine with Tommy. She was a great friend that day.
The morning of Tommy's surgery, the nurse came to his room around 3 in the morning to start an IV so he would have immediate access once he was taken back to surgery. She gave him a medication called Versed. For the kids that Versed works for, it pretty much gets them "mellow". And when I say mellow, I mean Tommy was stoned! All week, he had been cranky, sleepy and just not himself. After the Versed, he began to look at us strangely. As the nurse inserted the IV, Tommy began to laugh hysterically. I will never forget that. I took pictures of the little giggle box as he was prepped for surgery.
After Tommy was taken back, my friend, Anne, arrived. She bought me breakfast. Had to remember to eat and take care of me. The hospital gave us a pager. Once an hour, it gave us an update. We could be anywhere in the hospital and get it. We were having lunch in the cafeteria when the nurse that was calling in the updates sat near us. She called the OR and got an update for us right there instead of making us wait for the next page. He was in such good hands. Through it all, we were told Tommy was having the Glenn. Once surgery was over and it was time for Dr. Bradley to talk to us, it had been a long day. About 5 hours. He told us Tommy did very well, but he was not able to do the Glenn. Once he was in, he tested the pressures in Tommy's lungs again and found them to be much higher than expected. Instead, he put in a bigger shunt like the one Tommy had done when he was a newborn.
Tommy's recovery was right on track after that. No big surprises, no infections. Our only drawback from the whole ordeal was that Tommy could not make it off of the oxygen. His lungs had been too damaged by his lung disease and later what we would learn to be pulmonary hypertension, asthma and reactive airway disease as well. Tommy came home on 35% oxygen. Our whole lifestyle had to change to accommodate the oxygen.
Tommy started sleeping in the living room because we had a limited amount of length that the tubing could be giving him oxygen from the concentrator. It was a big, heavy, noisy, hot machine and not easily moved. We found it easier to let him sleep in the living room instead of trying to move him and all of his equipment twice a day. I started sleeping on the living room couch because we did not have nursing and his airway had to stay clear. I woke up several times a night to adjust his feeds, and to suction his trach. Life at home became very different. Tommy was stable, but dependant on the oxygen and my constant eye.
We battled the flu twice over Thanksgiving, and that would start our monthly hospital stays. Once a month, every month, something needed to be addressed.