A Happy Heart

Olivia was pretty nervous for her appointment this morning. She told me over and over that she didn't want to go to the scary hospital where they give her shots. It didn't matter that I told her a million times that we weren't going there, she didn't believe me. Poor thing. But once we turned onto Mario Capecchi and then turned right into the outpatient clinic instead of left into the hospital that little girl said, "We're going here, mommy?!" She was so excited to see that mommy wasn't a big ol' lie face, secretly taking her to "the scary hospital."
Mommy, of course, was pretty nervous too about Livie's appointment this morning. More because I have learned that the dang shoe will always drop eventually. Luckily, today all shoes are undropped (where did that saying come from anyway?)
So, here's the run down for today. Olivia's sats:97 Olivia's BP:100/(?) (I forgot exactly, but just where they want it.) Olivia's energy: enough to make mommy, Dr. Pinto, and the cardiology fellow exhausted! Seriously, she was bouncing off the walls. Her heart sounds perfect, her liver is the perfect size (enlarged=bad, something we have dealt with quite a bit.) She has made up for any growth her body was struggling with before the fontan, her fenestration being closed (the procedure that was done in her cath last November to get her off oxygen) has not caused any problems, and even her hair is better. We're not sure if it was caused by the heart medication that she was on before her fontan, but her hair was dry, brittle, and super thin. It's still thin (poor girl got my hair...) but it no longer breaks off all willy-nilly.
So, a good deal of Livie's appointment was social because we love Dr. Pinto. We chatted about summer plans, Liv's old card, Dr. McCandless who is pregnant with twins, and how we'll miss seeing Dr. Pinto as often...but not really. Luckily, I'll get to see her in August for a fetal echo for baby flower. Maybe I should just find her on FB. Do doctors have time for FB?
After meeting with Dr. Pinto we got to meet with Trish and Dr. Etheridge, Livie's pacer gurus. Pacey is still pluggin away inside my girl, keeping her heart happy and is enjoying a nice long battery life of nine years. And that number could go up because we reprogrammed the girl! I'm really quite excited about it. Olivia was set at 90 bpm. With her being a big girl now, they've decided to turn her down to 70 and also to utilize Pacey's sleep mode! So, when she's sleeping her hr will be able to go down to 60. Now, why am I so excited? Because this girl has been a lousy sleeper lately. She has "bad dreams" every night. They usually consist of someone taking a toy from her, or mommy get mad at her. Either way, she wakes up crying and I have to go calm her down and I'm tired! I'm hoping this lower rate will enable her to get into a deeper sleep and we'll all sleep a little better. I asked the pros and they agreed that this should help.
Another bit of pacer good news, JOY OF JOYS! With the pacer, comes a little box that you use to check it. They like you to check the pacer every three months. We haven't ever done it, because you have to have a land line, which we don't. And we suck at remembering to take it to my in-laws. In January, we got a call that we'd be getting a new cell phone checker thingy and I was super excited. Then it never came. Today, we reordered one and within a couple weeks I can stop stressing about getting Pacey checked!
So, with Livie's new settings battery life will go up, sleep will go up, and I am thrilled. We will meet with the pacer gurus (and Dr. Pinto) in 6 months to see how my girl is doing on her new settings. Eventually they'll get her on a treadmill to run while they monitor how it does but she's still too young for her to cooperate with that test. Pacers take some tweaking with kids since they're geared towards the elderly, but we'll get her perfect settings eventually. If we haven't already struck gold with today's change.
Today was such an answer to my prayers. The fontan, as the final step in her repair, scared me so bad because, once we took that step, the only step left if she was struggling was transplant. I've been so worried that her body would hate the fontan and she'd end up on the transplant list. I've spent the last six months watching her like a hawk for any sign of struggle. Even when I didn't find any symptoms of failure I would worry that I was missing something. Still, I had that nudging telling me she was fine. And still, I worried, because I'm her mother. I feel like after today I can finally breathe. I can finally relax a little (only a little because things can still change quickly with my Livie) and stop worrying ALL THE TIME. We went to the zoo to celebrate and I was overwhelmed with gratitude as Livie walked the whole place, rode the carousel, and laughed and giggled at the monkeys. She got feisty when Ella would get in her way, she was polite when other kids did the same, and she was there to hold my hand at every step. This girl is living her normal life. I doubted so many times last July-November that we'd get her to this point, but she's made it. We made it!