Thursday, March 4, 2010

it's all about the Natalie..

This blog is really overdue with an update about the Nats.
I had to scroll all the way to the 10th of February to figure that out. I realized that not only have I not updated about her most recent heart checkup, but other happenings too.
I'll start out with this, Natalie is kicking ass. She is doing FANTABULOUS and that deserved the capital letters. From her booming language to her new(ish) hopping skills I just don't know where to begin.
I'll backtrack..
On February the 12th Natalie had her second post-op heart checkup with our cardiologist. This was an echocardiogram-free visit so we only had an EKG, chest x-ray, and pulsox check. It's funny, I say "only" and some parents go "ooohhh I don't think that could be labeled as 'only'.." Honestly, when you've been through these visits for almost 3 years, this is an easy visit. James was so good and well-behaved which helps out more than he realizes. Natalie was too and even with her outbursts of anger with some tests, she really blew me away with how laid back she was. Her chest x-ray? the EASIEST one that I can ever remember. This child threw her arms up in the air (when they do the sideways shot) and didn't mind. She sat so still and calm for both pictures and I almost cried with joy. I watched her climb onto the scale to be weighed without a nervous bone in her body.. then I watched her walk over to be measured in height.. she immediately stood straight, looked forward, and waited until the calculations were made.. she was such a big girl. Oh the pride.
She is getting so used to these tests. Oh gosh and getting her pulsox reading was so easy too. The nurse began to ask, "so sweetie, can I see your..." and Natalie cut her off with a swift motion of her finger held in the air waiting for her reading.. lol
Everything was fine. In fact, so fine that her oxygen was brought down from a 1/2 liter to 1/4 a liter of oxygen therapy. Natalie is officially off of lasix, too!!
We are still allowed small breaks with only room air throughout the day, as long as she's active. Her pulsox reading was in the low 80's but because she looked so good their wasn't much concern. Some small talk about possible new collateral veins that may have grown, the Fontan surgery not being an immediate overnight fix (wouldn't that be nice)and that it just takes time for this operation to work it's fullest potential and a few other things. It's all just talk with any possible future heart catheterizations to check for any additional (and unnecessary) collateral veins and also, if the pop off point from her recent surgery (aka the "manmade VSD"/fenestration between her ventricles to allow her pressure to stray from being high during recovery and well, anytime) will close on it's own or not. Time will always does and there is no need to let her do anything other than be a kid and keep feeling better.

She's doing fantabulous and that's all that matters. Have I mentioned her hopping skills? Seriously, this kid is full of energy and joy. Astonishing.

Yesterday, I get a phone call from our pediatrician's office saying, "we're calling to remind you of Natalie's 11am Thursday appointment... yadda yadda yadda.." and I was all "hey, uhm what?? who made that appointment and for what?" Apparently, next to a few other crazy unexpected things that this office does, they like making appointments without asking first (they've done this many many times). I am a stickler for tracking our obligations so I have been able to prove that I'm not forgetful or crazy. Or that tired. So, we managed to work it out and keep the appointment to get Natalie's RSV shots. With a lingering cold in the household, Natalie had a rough morning with her cough. She slept okay the night before thanks to a dose of honey and Benadryl (should think of mixing the two since that liquid Benadryl tastes worse than Jagermeister).
I didn't like the every-second-hacking this morning that was goings on so I felt very grateful that the office "messed up". We really needed those lungs checked out.
I took her in and they immediately brought us to the back..again, very grateful. Our regular doctor is there and lets us know that Natalie's lungs sound beautiful and clear and that it's probably just a cold..but wanted to get a good oxygen saturation reading before we continue with the shots.
This is where I get nervous- this office's pulse oximeter. I hate that machine. Scratch that- I hate THEIR machine. It never seems to be very accurate but who am I to say.. So, this woman walks in, places it on Natalie's tiny finger for 3 seconds (I kid you not), declares she's at 77 and walks out. Feeling not only confused and slightly scared, I heard her speak to our regular doctor about it and she calmly asked her to check it again. For a few extra seconds she kept it on, and it was about the same. There goes the anxiety..but for Natalie, I stay cool and calm.
They have me crank up Natalie's O2 to a 1/2. Check the "sats" again- 76. UGH. Not.liking.that. Our doctor comes in very concerned and says that something strange is going on. I say twice- "guys, her lips are nice and red, her skin is peach, and so are her nails, and she's playing well..are you sure that this machine isn't broken?" and with nervous laughter I add, "hehe..not that I'm an expert or anything" (letting my over-niceness come out to appeal to the annoyed nurse who likes 3 second readings). Our doctor agrees with me and they go ahead and get a new attachment for a new reading. Until then, I'm told to crank up the O2 to a whole liter. I do this and hope that I'm right and that something strange isn't lurking..
A different, and much more patient, nurse comes in with a new attachment, uses Natalie's thumb, it fits snug in it, and VIOLA! 88!! We turn the O2 down to 1/4 again, VIOLA! 85!!


So, after the shots, we went home. While we walked our brief walk home, I almost cried from the rollercoaster of emotions: the fear, the angst, the everything.. the "oh shit, am I going to have to go the hospital with her for x-rays, and echos and this and that and???..." but then couldn't stop smiling at this beautiful kid. This beautiful kid that's been through so much more than any of us can understand.. is only taking a baby aspirin a day after all of those medicines that she came home with.. it is just amazing to look at her and you still can't tell that she has a heart condition. Maybe she's going to be the next Shaun White. Or not. But maybe we'll start her with ballet first so she can dance like Dorothy the Dinosaur and sip "rosie tea". Whatever this princess does is fine with us.

To be able to ponder and plan a future is a joy that I can't even explain......


Chicke3 said...

I am so proud of Natty! She is such an amazing little girl!

Carey said...

Thanks for the update, Dawn. I'm glad to know that Natalie is doing so well. I also think you're very brave and should proud of yourself for handling everything so well. You're an amazing mom!! : )

connie and adam said...

That is good news no echo I bet she loved that. :)

Anonymous said...

Great call on getting another machine!!!! I know hospital workers are busy & usually overwhelmed, but you went with your "gut instinct", and spoke up. PP