Aside from lusting after my celebrity crushes and complaining about my uterus, I actually do have some good updates. Really good stuff that I have been pretty excited about sharing..
Natalie had her latest echocardiogram and EKG on Wednesday. I took a chance with going all the way out there on the bus with her and she handled it like a champ. The hospital is about 30 minutes away if driving so with public transportation it is alot more tedious. But so worth it. Even if the bus goes through every nook and cranny of this earth to get to Denver Childrens, that's okay.
We got there right on time and she didn't complain one bit about the long journey.
This particular visit was for a sedated echo since the last time we tried (about 2 weeks ago) she wasn't having it. Our cardiologist requested me make her appointment soon since she's about 7 months pregnant and is going on maternity leave soon. She wanted to get the results before she left.
I keep being asked by members of the hospital why Natalie needed to be sedated and it's hard to explain how terrified your child is of being touched by a health professional. Some seem to understand and some don't. I also threw in there how Natalie was getting over some sort of stomach virus that week so in all fairness, that poor kid already went through alot that week.
When it's time for weight, height, blood pressure, and temperature check Natalie is perfectly calm. She makes me so giddy when I see how she just sits there and lets the nurse do what they have to do. But it's time to take a medicine (the sedation medicine to more exact) or lay down for a test then it's an immediate right to "freak out city".
The sedation medication that she was given is called "chloral hydrate" and they ended up giving her the max dose that they were allowed to give her because have I mentioned how this child DOES NOT GET PUT TO SLEEP EASILY?
When her chest tubes were being removed after her last surgery, for example, the doctors tried to sedate her with a nice dose of Propofol (aka "the Michael Jackson drug of choice"). She would not sleep. At all. The doctors and nurses were so confused by this and even I am. Blown away is more accurate. The last echo that she had was similar. The chloral hydrate made her rest for a total of 5 minutes. When being sedated for surgery and caths? same thing.. it takes her quite a while to drift off.
Tough kid is an understatement.
So, Wednesday was really similar but different.
This kid was thrashing and screaming and hitting like a crazy person. This sedation medicine made her so angry and upset and drunk all at the same time. This reaction is normal, I was told but it didn't freak me out any less.
She was, so far in my experience of my life, the worst drunk ever. But that's okay. Because after a half an hour of what felt like endless screaming, she just suddenly fell asleep. I felt so bad..but a crib is used for any child under 3 (unless requested otherwise by the parent, which then is tough because you have to sign forms to take responsibility away from the hospital if she falls, gets hurt, etc) Thank god for me forgetting to request this because the crib rails saved me from dropping her so many times. At one point, I couldn't handle her and tried to lay her in the crib..kind of like when you have wild dog or cat that you're trying to put in their cage quickly without getting bit? and quickly put the rails up to let her just roll around and scream.
That was insane.
But she did great after that.. fell asleep and slept through the entire echocardiogram. The results are FANTASTIC and got the official word from her cardiologist that we don't have to visit a cath lab to close the fenestration or make a visit with her for at least 6 months. Contrary to what the echo techs and nurses were warning me about, Natalie's fenestration (the tiny hold in her conduit that gives her a pop off point so her heart pressures don't get too high) does not have to manually closed in June. She is too young and her doctor wants to wait a while longer. If Natalie gets this heart catheterization it should be her very last heart procedure ever. Ever! Wow..... it is amazing typing that.
I don't want to speak too far ahead because you just never know. There have been warnings about kids like Natalie needing pacemakers and further heart caths as they get older..but I don't lump Natalie in that category. There are many Tricuspid Atresia survivors who, like my heart believes, never have any more procedures after the Fontan. This possible heart cath in the future should be it. After that, she'll have normal heart checkups, EKGs and echocardiograms to monitor her condition for the rest of her life. The baby aspirin that she chews daily will also be a part of her whole life.
And those things? are easy. EASY. And we are so lucky. Completely blessed and just stuck in full amazement of how Natalie's body, heart (and mental state as well) deal with her condition perfectly. Her body was built to deal with her condition and modified heart. It blows me away and it will always blow me away.