Jack's story: Part 1 -- The Hospital

Yesterday, we got to Cedars-Sinai at about 8am. We waited in the waiting room. After a while, a nurse came out, doing her rounds (she would come out periodically and update the families on what was going on in surgery/cath lab), and told us they took a baby in ahead of us so it would be a couple more hours (this was a different baby than the open-heart one). We were supposed to go in at 10am. At 11am, she came out again, and said it would be at least another hour. We were kept company by the very large Italian/Mediterranean (not quite sure which) family whose 9-day old baby was having open-heart surgery. At 12am, they called us into the holding area.

They took Jack's vitals and did all the paperwork. The anesthesiologist came and we did a "practice run" with him holding Jack for a bit, then giving him back to me. He told me that he would be back in a few minutes to do it again, but we weren't allowed to let Jack feel anything was different (no goodbyes, no kisses....no dramatics, basically). Luckily, I hug and kiss Jack every day, so he didn't think it was weird that I spent the next few minutes doing that and singing to him. The anesthesiologist came back, and I handed Jack over. He told Jack that he would show him another baby in the area, and said Jack could play with his computer, too. It was very cute, and Jack didn't cry or fuss at all. Inside, though, I was all butterflies. :)

They led us out of the holding area, and told us it would be another couple of hours. We told the volunteer at the front desk that we were going to get some lunch. We spent an hour eating, making phone calls, and just trying to gather ourselves for the long wait. At 2pm, we went back to the waiting room. The nurse came out a couple more times and told us they were "fiddling" with the different devices, to see which would fit. Around 3pm, the nurse came out again and said Jack was stable and fine, and still asleep on the table. She told us that Dr Ferry would be out in a few minutes to talk to us.

Dr Ferry came out. He told us that when they put the TEE (transesophageal echocardiogram), they found that the membrane separating the upper right and left chambers was like swiss cheese. There were a bunch of tiny holes everywhere, not just the 2 they thought they were dealing with. They tried every device they had, but every time they would put a bigger patch in, another hole would tear, making the hole even bigger. That, and the membrane isn't strong enough to keep a patch in place. So, now he has one big hole that's about 22-24mm.

He said they'll have to do open-heart surgery, but not right away, though. We're to go for a follow-up appointment with his original cardiologist, Dr Wong, in a week, and then we'll probably get referred to a cardiac surgeon from there. He also mentioned that now there's quite a bit of blood shunting (passing) back and forth between the two chambers.

After Dr Ferry talked to us, we practically rushed to go outside and make all the necessary phone calls. I was very upset.

When we got back upstairs, we had to wait another hour before we could be taken back to the holding area to see Jack. He was awake, and not liking it, but I had to hold him and put pressure on his wound for an hour. Very difficult. We spent the night at the hospital, and they released us this morning, around 10am. The nurses all knew Jack, and his night nurse said he didn't even twitch or wake once during the night when she came in to check his vitals and his surgery site. We had to keep him lying flat until 8pm last night, which he didn't like, but after that he was much happier.


We're all doing pretty well. Jack's doing great--you can't even tell he had surgery. He's such a trooper. When I talked to my friend, briefly, yesterday, she said, "Well, God made Jack really strong for a reason." I couldn't agree more. He's the strongest 2-year old I've seen yet, and there's definitely a reason for it.