Saturday, October 9, 2010

update with probably too much thrown in..

My head is kind of going a mile of minute..definitely a lot faster than the keys on this keyboard.
Kids, you have made a second keyboard insanely sticky with juice.. grr.  The space bar, the letters C, S, V, and X are not working too well.. but hey who needs the letter X? At least my As and Es work.
Anywhowhatorwhere, I will start with Natalie's cardiac checkup that she had Friday! Her doctor had a baby girl a few months ago so we waited a bit to find out when they wanted her back in. Luckily, they called us this week and had her come in within a few days.
We knew they were going to attempt an echocardiogram and EKG. Natalie knew too. She refers to those tests as the "one with the stickers on my chest?" and then tears up. Guys, for real... it makes me want to hide and cry. I don't like seeing her get worked up and upset about these tests. And then she says "no stitches? no stitches mommy?" If that doesn't break your heart well I just don't know.
But here is where it gets way easy.. she doesn't struggle at all for her pulsox, weight, height, or blood pressure. She smiles the whole time. But there is something about the stickers that scare her. I know that they can't feel too good coming off. Even without a hairy chest I'm sure they still feel odd and even uncomfortable.
Side note: Rick had an EKG (that ended up perfect by the way) a few months back and he had to go swimming while looking like a razor attacked him in his sleep.
So, we get her to lay down on the exam table with the bribe I brought along: a VERY large purple and green snake lollipop that actually made her giggle. After some tears and 10 minutes of convincing, the echo tech finally got to take some good photos of her heart. I think us saying "Natalie if you don't calm down we'll have to head to the main hospital" worked. I hate using that as a last resort but we really would have had to schedule a sedated echo and man oh man.. I am done with those. They're worse than Natalie laying there for 10 minutes and sobbing. They did mention they could try just giving her a small dose of Versed at the main hospital, but I know Natalie and Natalie still would freak out.
After a few minutes of calm picture-taking, Natalie appeared to be A.) falling asleep or B.) watching the Elmo movie with her eyes half-open..seemingly very relaxed in a daze.
She would look at me occasionally and smile and then lick her enormous lollipop. This, I couldn't believe my eyes, was easy. Rick sat on the table with her and everything worked out really well. Our doctor came in to talk to us for a while..I was finally able to congratulate her, in person, on the birth of her new baby (she was beaming), and found out some awesome (KICKASS) news....
Natalie's doing so well and so stable that she does not need to get this fenestration (the hole left on purpose from her Fontan operation) closed any time soon.
Here is an excerpt from Cincinnati Children's Hospital website about the fenestration for even better understanding (I love their website):

"In either method, a hole or "fenestration" is often made between the Fontan circuit and the right atrium so that if pressures become very high in the Fontan circuit, there is a "pop-off" into the heart. Patients with fenestrations may have a more stable post-operative course with smaller and less prolonged collections of fjluid within the chest (a common complication after Fontan surgery). Many fenestrations close spontaneously many months after surgery, but can also be closed during a cardiac catheterization procedure if deemed necessary. Currently, when patients have been well prepared for Fontan completion, the success rates are 90 percent and higher."

This hole is helping to keep her pressures stable and perfect which's working the exact way it should be. To close it would increase her pressures dramatically and then we're talking about a huge imbalance. Her body is still adjusting very well to the operation and unless we start to see more increased purple spells in the years to come, this hole isn't going to be closed until she's in her teens! Typically living in high elevations, this hole will probably have to be closed in the cath lab.
The doctor asks us "why are you wanting to rush to close this fenestration?" Without mentioning how our last April echocardiogram involved a nurse telling me it would probably have to be closed within a few months (had a sense of urgency in her voice), I bit my tongue and just said "I honestly don't know" and laughed. We talked for a while about the many children that were lost this past week due to CHDs (something as I'm typing leaves a lump in my throat) but also that there are adults like Lauren, who inspire me everyday to live a little less scared with Natalie. Regardless of how this past week and half made me question Natalie's mortality, I've had to remain focused on how well Natalie has been doing. Typing that makes me feel so selfish. I hate that...
The doc and I also talked about her new baby, who is just about 5 months old.. and keep in mind this is the doctor that wasn't around for Natalie's 5 month Glenn surgery, she says to me "I know that you guys didn't get to have as much fun around that time with Natalie..with her surgery and all.." and boy did that make me smile. Because it actually was the hardest time in our lives but it was easier than it could have been.. we were easily adjusted to a baby that rarely cried from the aches and pains.. a baby that coped so well..we were..I hate to use this word but it's true.. we were lucky (we still are). I mentioned that to her and how easy she was with it all and she kept smiling..
I love Natalie's doctor. She reminded me today to just keep counting our blessings...

The EKG was completed with some screaming but then once Natalie saw their computer with the orange and yellow and green squiggly lines moving across the monitor, she was calm.

Here are yesterday's cardiac stats:

O2 level: 87% (last visit it was 84%)
weight: 40 lbs!
height: 39 3/4" tall
blood pressure was excellent.. somewhere around 98/56
We got back in 6 months and then after that? probably once a year! I am in shock. But it feels's a feeling good kind of shock. 

Before I forget for the millionth time, yesterday marked a year since Natalie's 2nd heart catheterization. This was the surgery that closed off those pesky 3 collateral veins, the 3 veins that we were dreading that grew because of her constant purple spells and lack of energy last summer. I remember so vividly.. after she came home the next afternoon, we all took the most wonderful nap and her ENERGY..oh that child's energy.. it was BACK. Just like that!! I still can't believe that the changes happened, literally, overnight. From that point on, with the minor roadblock of her January OH surgery, Natalie was all over the place.

Right now we're waiting on her very first medical ID bracelet. I wish I could find a cool picture of it but I can't. Once we get it I'll be sure to get it on here. It lists her heart condition specifically, her aspirin use, and allergy to penicillin. A few things prompted me to this but most importantly for now, I felt guilty for not doing it for her teachers. They can't always remember the exact name of her heart condition and allergies. They have over 30 kids to worry about. Plus, with them having to monitor Natalie's lips and fingers..being sure to watch her closely in case of a cyanosis spell..I had to at least help them with the bracelet. It's the least I could do for them being so accepting and helpful.
Plus, Natalie will be able to grow up with this and (hopefully) wear it proudly.. well, at least wear it without hating it. It's pretty that I can say!

Both kids had their flu shots this morning and handled them surprisingly well. I accidentally let the cat outta the bag last night and it still worked out okay. I used to want to let them know the day before the shot but for the past year or so that would backfire..lots of unnecessary anxiety and more sobbing ensued about it..
The line this morning was long so it was good that we showed up a half an hour early. The kids watched other babies and different aged kids get their shots and I think that helped. Especially when I told them "see this big crowd? they're all getting flu shots". That helped. A.LOT.
I'm learning you guys.. I'm learning each and everyday how to do this thing called parenting........

No comments: