The day Ben got his heart transplant was January 5th, 2012, but the story starts on January 4th, when I got The Call™.It was just another day in the PICU. Only January 4th is when Joe had taken the girls home for the first time. For some reason, the girls winter break ended on Wednesday and they needed to be back in school on Thursday. I know, crazy! So, Joe took them home with him that Wednesday night and was preparing to take them to school the next morning. He was supposed to go back to work that Thursday as well. But, well, plans changed.
I was reading in my bed next to Ben's crib in the PICU. I would occasionally get up and go sit by Ben for 10 or 15 minutes and rub his hands or his head or just talk to him. I was back in my bed when I got the call though. I remember the nurse came in the room. I can't remember her name, but she was blonde. I would recognize her if I saw her. She came in the room with a smile on her face and said, "Doctor G. would like to talk to you." I got on the phone and the most wonderful words came through that phone. "Mrs. H., we think we have a heart for your son." I couldn't speak at first. I was just in such shock. I think I talked to him for almost an hour. Just asking all sorts of questions about what would happen, how it would happen. He reminded me that they still had to go over and check the heart and that there was a possibility that it might not match or that something might be wrong with it. But, from all the paperwork they got on it, it was a good match and they were very confident surgery would go ahead.
After I got off the phone with the doctor, I called everyone. And it was 11:30 at night, but I still wanted everyone to know. I called Joe first. He had been just about to go bed since he was supposed to start back to work the next morning. He was dazed, I think. He was just saying, "Seriously. They really found a heart? Really Today of all days huh? Though it is probably good since the girls will be in school tomorrow." He had to then figure out how to get the girls to school and back to the hospital in time for surgery. I then called my sister. She was asleep, so I called her husband and told him that she needed to wake up, I had some important news. He woke her up and she called me back and said, "What is going on? Why are you waking me up at 11:45?" I told her the news and she almost cried. Maybe she did cry, I am not sure since I didn't hear it. She was so excited and she couldn't sleep all night either. She asked if she should come down. I told her what time the doctor said they would be doing surgery and she said she would be there in the morning. Next I called my mom and she promised to get there around 7 in the morning. I posted on my Mommy board thinking that no one would be awake at that time, but I wanted them to wake up to good news in the morning. To my surprise, I had quite a few comments right away sending prayers and good wishes.
The cardiologist had said they would so surgery sometime between 4 am and 12:30pm. Then I was told 5:30 am, then that came and went. I was basically up all night, a nervous wreck! Finally, at 7 am the cardiovascular surgeon came in and told me it would be about 15-30 minutes, and that they were just setting up. At 7:45, the anesthesiologist came in and said it was time. The chaplain had been with me since about 5 am since I had thought that was when they would take him. She stayed with me until he went back and then walked with Ben and I to the doors into the surgery area. I kissed him all over and told him to behave in there and that I wold be waiting when he got out.
Other than the time Ben was flown to Children's Memorial, the next hours were the hardest I have ever gone through. The waiting was so hard. The nurses and doctors were great about coming and giving lots of updates. I cleaned out Ben's old room in the meantime. Once a patient is post transplant they move them to a post transplant room in the PICU, so, I had to get everything–three weeks worth of stuff–out of his old room and in to a holding room until they got that patient out of the room. We had three different updates. Our favorite nurse, Mariah also went back to check on him and said he was doing beautifully. She said it was the most peaceful surgery she had ever seen. It was just going perfectly. About 70-80% of babies have to have their chests open after a transplant. this is due to swelling or donor heart size might be slightly too big. But, Benjamin did not have to have that. His heart was perfect for him and there was not too much swelling. The last update was them telling us he was off of bypass and his heart was beating and it was a nice strong beat.
After that day, I was utterly exhausted. However, Joe and I made sure to make time to go out to eat and then relaxed at a coffee shop–we felt that we earned it after that ordeal! We then went to Kohl's House and just slept for hours. Mariah told us, "if you want to get some sleep, tonight is the night to do it. He will still be paralyzed and sedated and you have the worst behind you. So, with that, I slept for a good long time. I even forgot to wake up to pump. Which when I did wake up, I freaked out about, thinking I had ruined my supply by sleeping in that one time. After that, we were on the road to post-transplant life and all that came with it. We learned about all of Ben's meds; all 16 of them that he would go home on. We learned how to check his vitals. We learned what the signs were for rejection or infection. We learned all about PTLD (Post transplant lymphatic disease), TCAD (transplant coronary artery disease), what heart rate was too high, what heart rate was too low, when to bring him to the hospital or the pediatrician or call the cardiologist. All things I had never thought I would ever have to know as a mom. But, we did it. And now, we have our adorable little 13 month (almost 14 months!) old. We still have to worry about meds and worry about infection all the time. He will always be followed by a cardiologist and have echos and biopsies. But, it is all worth it because we have our little boy!
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