Hospital or Horror Film Set?

“Oh, don’t go in there. Go back. Go back. Are you nuts? The only thing you’re missing is the scary music”….That’s what I would have told myself if I were watching a film of the day Justice had her first heart surgeries. It was my fourth anniversary and I could think of a million ways to celebrate but in a horror film, that was not one of them.

The original diagnoses for Justice’s heart defects were aortic stenosis, bicuspid aortic valve and congenital heart disease. This meant, her aortic valve was tight and instead of three little flaps that closed it shut, it only had two. We later found out that the aortic side of her heart was actually the better side and true to Noonan Syndrome, we added pulmonary stenosis and a dysplastic pulmonary valve. Again, this is where the valve is too tight and on her pulmonary side all the flaps were thick and deformed so; they didn’t seal or open very well. It was decided that they would do nothing with the aortic side of the heart but would do a heart catheterization and balloon the pulmonary valve to open it up so blood could flow through it easier.

We arrived at the hospital bright and early that morning. After checking in at the front desk, we were taken back to the pre/post op area. This was a large room with about 10 or so beds in it. Here they started Justice’s IV, took her medical history and things of that nature. In between prepping Justice for surgery her doctors would come and talk to us and answer any questions we might want to ask.

In the new hospital, they no longer have this community style pre/post op room. You go to your own little private room. Private rooms are good improvements; however, you did meet more people the old way. This day we were in a bed next to a 12-year-old girl who had broken her neck jumping on a trampoline. Maybe it was me being so incredibly nervous as it was but her story and the pain and worry in her parents eyes has stuck with me ever since. I have on occasion let me children jump on a trampoline but I can’t help but be taken back to the day we had to sit beside this little girl. One day the subject came up with Justice’s neurologist and I was relieved to hear him say that he cringes also when he sees a trampoline. Of course, his kids still talk him into it too.

From the pre/post op room you were taken up to another floor to the “Cath Lab.” As if I wasn’t nervous enough with this being Justice’s first surgeries and being seating next to a little girl with a broken neck, everything about going to the “Cath Lab” said take your baby and run! No Hollywood set could have been this scary. See the rest of the hospital was colorful and kid friendly. Just getting to the Cath Lab made you feel like you were in an “Authorized Personnel Only” zone. Everything was white, sterile looking and behind heavy metal doors. Our nurse led us down long hallways to a little waiting room who knows where. We were the only ones in there. Just us, some chairs, magazines and an old phone that wouldn’t let us dial out. This was before smart phones or Wi-Fi but with as deep as we were into that hospital, it probably wasn’t going to work anyways.

Every ½ hour to an hour, the nurse would call the old phone or come out to tell us how Justice was doing. This service is priceless. Now the hospital does it for about every surgery or at least they have done it for all of Justice’s major surgeries since the new hospital has opened but 10 years ago Cardiology, as far as I could see, was special in this way. Knowing your child is doing all right or even knowing that something has come up and the surgery will be taking longer than expected helps calm a parent’s imagination.

After Justice came out of surgery, the doctor came out to tell us she was doing fine and was in recovery. He then surprised me by asking me if I wanted the balloon he used to blow up Justice’s heart. Then he pulls out this surprisingly big tube with a deflated balloon at the end of it. In my wildest dreams, this was NEVER a decision I thought I would have to make. I had no idea what I was supposed to say. On one hand, it was kind of creepy to me. If I took it, that would mean I would have to touch it. On the other hand, if I don’t take it now, it will be gone forever and I might regret it later. I thought maybe I’m just in shock and all parents take things like this from the doctors. Why else would he be asking me? I ended up taking it. I figured I could always throw it away later if I didn’t want it.

Before we knew it, we were back in the pre/post op room. What happened next is a story that is still told by the nurses to this day. I know doctors do great things but many times, there’s a nurse laying her career on the line to insure those great things get carried out. Next post, I’ll tell you about an incredible nurse that showed amazing compassion for Justice.

Do you have something odd in a baby book? Been a little freaked out by a doctor’s office or question from a medical provider? Let me know, I’d love to hear from you.