Tales of a TET Baby: Hospital Tour and Meeting the Surgeon

 There are a few moments in life where you just can't believe you are about to have to do what you're about to do. I feel like I have had more than my fair share of these moments in my life. Last week I had two more such experiences. Both times I just thoughts "why am I having to do this?" "No one should have to do any of this, ever." Just sick to my stomach with dread, but also fully aware that there are no other choices. We just have to do. I just have to show up, everyday, and face one terrifying thing after the next. I have to try to find words to say, try to help my family through it, and try to hold back the tears until I'm back safely in my car.

Last Monday I picked Zane up early from school so we could go have a tour of the hospital with an amazing child life specialist. The whole drive there I was wracking my brain for something to say, something to prepare him, but we just listened to music instead. My brain was in a fog, I couldn't form any logical thoughts or think of any intelligent questions we should ask. Zane was very quiet, nervous, but also excited to see where he would be staying when he's at the hospital. We took a full tour, starting at pre-op. We say the small holding room, then walked down the hall where they will wheel him away from me. They told me they would give him medications to make him sleepy before this point. The wheeling him away is the truly unimaginable moment. I walked down the hall with him and they asked if he wanted to see an operating room. I did NOT want to see an operating room, but Zane did, so we walked on and my stomach churned.

 From the OR we went up to the ICU, he got to see a what the room looked like where he would be waking up. They recover them in the ICU and potentially extubate them before we are able to come in and see him. The time from when surgery is over until we are able to go to the bedside is between one and three hours. This seems like a long, scary time. I know they have to get him settled and I don't want to be there for extubation, but still that is just more time to wait. After surgery he should speed two or three days in the ICU followed by two or three days on the 9th floor surgery unit. I'm shooting for four days after the initial surgery day.



Then we went up to the 9th floor where Zane was very excited to see that he would have his own bedside table for all the food he was going to get to eat after surgery. I say it again, glass half full all the time. Then on to the playroom where he got very excited about playing air hockey post op, which of course is one of the numerous things he cannot do post op. We ended our tour in the outdoor playground where he smelled all his different options for his anesthesia mask. We asked a few questions, reviewed sternal precautions, which include no pushing, pulling, lifting his arms above his head, wearing bags on his back, picking things up, pretty much everything for four to six weeks to give the sternum time to heal. I think the tour was good for Zane, he can envision all the place he will be, all the things he will see, for me it made it all too real. Zane left thinking he was famous at the hospital since I knew everyone we saw, correction son, I am famous at the hospital.

 Then Zane and I got to have dinner by ourselves before Rowan's T-ball game. This was lovely. He was in good spirits, though probably as subdued as I've seen him during this whole process. He had a lot of serious questions to ask and didn't really like most of my answers. When we left the restaurant we saw this pennant in the store window next door and had to get it. We do hard things everyday these days. We're getting good at it.

Thursday's hard thing was Zach and I meeting with the surgeon. I drove there thinking, "this is just the worst thing in the world." I had requested to meet him before surgery day, in order to hear all the terrible things without Zane present, and immediately regretted that decision. I did not want to hear the graphic details of what would be done to my son's heart. Everyone at the hospital as ranted and raved about how lovely, wonderful, and kind the cardiothoracic surgeon here is. "He has great bedside manner and is a phenomenal surgeon." Well turns out all cardiothoracic surgeons are robots. I think they have to be in order to not think of their patient's as adorable little kids with sweet, loving families, just hearts that need to be fixed. He gave us his speal, one I am sure he has given a million times, then he wasn't too excited about my ten questions.

It sounded so easy, simple, no big deal when he went over the procedure and recovery. There is the potential that he will recover quicker than we had expected and should be able to swim at some point this summer. They most likely will only bypass the right side of his heart so they won't have to fully stop his heart. He won't be on meds for too long, he should be home in a few days, all seems so simple when someone else talks about it. I kept myself together, asked intelligent questions, heard what they said, and understood it. I realized on my drive home I had been imagining baby Zane, in the previous CICU, with his tiny baby chest tubes, and his little body. It was all fine because little baby Zane had already been through all of that. Baby Zane was unable to speak or remember the pain. Then I thought of all the things I had heard about, but instead of envisioning baby Zane I envisioned seven year old Zane and I cried all the way home.

Last week we also had our family meeting with Zane's therapist. She said he's doing good and just having difficulty dealing with all his acute anxiety/stress. Hopefully we fix his heart and he is back to normal. Last week we did a lot of hard things, but there are so many more to go. Hard things are just that, hard. Devastating, heart breaking, soul crushingly, painful. It is exhausting to face multiple terrifying things everyday then have horrible dreams all night. I hope Zane is sleeping better than I am, he's overly tired so maybe that's helping. After those appointments last week I think we have a break for a little bit until his pre-op appointment. We're working on getting our house pulled together, working on visitation schedules, child care for the little boys, and trying to get through the last few weeks of school. Time keeps racing by!