Ok I said I’d write the other half of Josie’s “birth story” and left you hanging. Sorry. I’ll deliver in one cathartic push at some point. Right now I’m deep in thought. I was going to say “pregnant with thought” instead of “deep in thought” to keep playing with words, but then I figured my Facebook entry would cut off right at the wrong spot and everyone would see the beginning of this post and think I’m announcing big news… and I’m not… have I lost you yet?
Never mind. *tangent alert*
Ok. SOOO. Josie has a few appointments coming up end of January. We report to cardio twice, not sure why. And then dental (boo).
I am worried. And I’ll explain why and ask you for prayer for peace and for Josie’s health.
1. Firstly, today was a whirlwind busy day. Josie had to stop 3 times to take a break, literally laying down flat randomly on a park bench and a picnic table while on a walk today. She was fine after a couple minutes, but it was so random. She was playing running with all the kids; then she was laying down. Boom.
I am fearful because she has a progressive heart problem. Subaortic stenosis basically just gets worse and worse until you need to have an open heart to clean it out and open up the passageway. The question is how long between surgeries can you go. The surgeon was very serious when shook his head and said he just didn’t know, that it could be 6 months or 6 years. We know she needs another open heart for a valve replacement down the road (likely in her teens if not before). But I would really, really like not to need another one besides that.
Oh man, I hate this. Worrying accomplishes nothing, and 6 months post op back this summer she had an echo and looked great. Here we are a year out and she’s due end of January. She’s never had to stop to take breaks. She’s done it a few days here and there over the past week. I am paranoid it’s somehow gotten severe and she’s just going to not wake up one day. It’s possible. But they’re monitoring her every 6 months and I am sure that’s being on the safe side. So I will try not to think crazy scary thoughts or even worry we’ll have bad results at our check up. But I will probably be throwing up that morning from worry. It makes me physically sick to be in that kind of limbo. Ack.
2. Dental… sooo she has dead teeth. We’ve gone back and forth with pulling them and ended up leaving them twice with 2 different surgeries. If she had them pulled now it wouldn’t probably be under full anesthesia (as opposed to during her other ops where she would have been knocked out) so this would be traumatic. So I don’t want to go to her appointment and learn we need to schedule a tooth pulling without sedation. Yuck.
Worse than that, I’m worried they’ll be like, oh its really bad, she has signs of infection or something (because they said it can happen without pain and we wouldn’t know). Which would be awful because then they’d pull rotten teeth full of horrible bacteria that could easily infect her heart and she could die of infective endocarditis or need that valve replacement real soon…but of course they give antibiotics but what if it’s MRSA or something–PLUS what if she gets cdiff from being on antibiotics.
ALL OF THIS I worry about. Often. I’m a horrible, horrible worry wort. It’s miserable isn’t it? So many negative ways it could go. But I have hope and ask for God to give us a boring safe trip to Shands followed up with smooth check ups that show a beautiful echo, and boring yucky teeth that will probably fall out on their own in the next year or two. Come back in 6 months. Sounds perfect.
So I have to just remember to breathe. Remind me. BREATHE JENI. And I ask for prayers if you somehow made it through all that to this request–please keep Josie in your prayers for easy peezy check ups / excellent results. The taking breaks while playing really scares me. A lot.
Today at the park