I can't believe I survived Leighton's Open Heart Surgery. I don't know how we did it (well I do....prayers, and a blessing), but I never broke down, I handled it. I went sleepless nights, and I ended up being Leighton's nurse and mommy. She WOULD NOT let the nurses touch her or give her medications. I'm sleep deprived, and have bronchitis, but I feel better then I have in months. It was like I was waiting to cross a bridge, and my life couldn't move forward until I did it, but it was scary and I really didn't want to. I'm so glad I can move forward now. People keep asking me if we're doing OK, and I know I am. I feel back to myself, and I haven't felt like this since they told me she had to have this surgery.
This is what I wrote while sitting in the waiting room.
"Leighton just went back for surgery. It feels horrible. I've realized I like to detach from hard situations. It's the only way to cope...just don't think about it, and talk about anything but.
It's really hard to be "those" parents. You know the ones you use to compare your situation to. It's what helps to get a little perspective on your situation. We're the ones here for something way worse then dental work, t&a removal, circumcision. The parents that get taken back to the "special" room, and meet with a large number of people. Gets to sign the extra paper work for the extra scary IV's. The only ones with a pager. I always do it.....there's always someone dealing with worse, I tell myself to feel blessed and have gratitude.
In the surgery waiting room there is no one to look to worse off then us this time. I'm going to have to reach further then this room, but I'm going to detach for a while again."
It was hard being in the waiting room, but we didn't want to leave. We were there from 9:30-3:30. By the end we were basically the only ones left. All the other "morning parents" had been called away. You want to hear the way we passed time...we listened to the kind of trashy parent yell at her sister, and laughed. We talked to another chatty mom, thank goodness for her distraction. We discussed why you would have your 2 year old circumcised, don't you just forget about it by then, and totally laughed when the doctor talked about how great his (sorry) shaft looked...um really did he just say that? I read this blog post, and it actually made me laugh.
The waiting room was the very worst. After that I felt like it was smooth sailing, and it really was. When we got into the CICU this was Leighton's IV's
I know I should have been scared for Leighton, but after the surgeon came and saw us I felt a huge relief, and I KNEW she would do awesome, and she did! I was more in awe. She had all these IV's going at once (mostly in 1 of her 3 IV's). What was amazing was how her nurse would page the pharmacy for say...blood pressure medication, and it came up the vacuum tube in 1 minute (seriously), and it would be immediately in her little body helping to stabilize her. She looked so good after surgery too. Just a tiny bit puffy. I have pictures of it, but I'm not posting them. Her dad gave her a blessing and in it he said that she would make a quick, and full recovery so she could be back in our home feeling it with her joyful spirit. She was home in 5 days, with no oxygen, only Tylenol for pain, and she only has one medication to help her body drain fluid.
The hardest thing we had to battle is the preconceived notions of what kids with Down syndrome have. The discharge nurse really wanted to send Leighton home with some oxygen for Sleep Apnea, not because she ever had any signs of it (I know I watched her breathing, not once in the 4 nights did she EVER stop breathing, she actually had her stats always rise during sleep) but because Down syndrome kids ALWAYS have sleep apnea....and I should really be watching for it. It's hard to have people tell you things you already know, not saying I know everything, but I knew everything they "suggested" I watch for. I informed her YES her pediatrician and I have talked about it, and I know she might develop it, but as of now he isn't concerned about it, and I really am watching for it. They left her breathing tube in a lot longer then normal because of fear. The surgeon finally came back in and said..TAKE IT OUT! The nurse had to be told by him and 2 other doctors to finally do it. Sometimes I think it's harder on them because of the nurses and doctors let fear make their decisions sometimes. Leighton had croup after, they thought it was caused by a virus (she tested negative) but I know it was because she was awake with it, and crying, and choking, and she was swollen.
The best part of the stay was how Leighton reacted when her brother and sister visited. It was like a complete mental turnaround. They cheered her up. Her favorite part was the wagon. Just the mention of the wagon would get her to stop crying.
She loved the playroom too.
She seriously was a rock star...She just handled it so well. It was such a relief. She was always still her funny self. We had to detangle her from her wires 3 times a night (crazy sleeper, she had to get to her "tummy splits" and she was ALWAYS knocking out her oxygen...She didn't use it half the time.
I'm so glad we are home. A few more cardiology apointments and they say Leighton's life as a heart patient will come to an end!
-JS
