Day One Complete. Day Two Plans.

It was a long day, but overall, I think a good one.

Her cardiology appointment went well and the doctor didn’t make me feel like I was a completely crazy person for wanting another opinion.  She noted the issues in the Evie’s EKG (lag in communication between the two sides of her heart and an abnormal electrical direction) and she didn’t feel they were hugely concerning. She did decide to go ahead and piggyback a sedated echo and angiogram onto some of Evie’s other procedures, though.

We had a little time to kill in between appointments, so we went and got Evie’s walker out of the van. She had a blast! Usually in hospitals, Evie just clings to me like a little koala baby, eyeballing everyone, thinking they are going to hurt her.  But today, she was independent! She was free! And she loved every minute of it. She walked all over, smiling at everyone, getting in the way, and following people. She’d walk straight up to groups of people, wait for them to look at her, babble away, and then move on to the next crowd. It was so neat to see this social side of her personality finally get a chance to shine!  And it was so fun for us to show her off. We really never get a chance to be out with her, so it was pretty nice to just soak up the exclamations of how cute she was!

 

We then headed over to her swallow study which was a total bust. We tried to get her to take a nap before the test, but she wouldn’t hear of it! But then in that dimly lit radiology room, a nap started sounding pretty good and soon enough she was sitting up in Daddy’s arms, completely unable to keep her eyes open. We were able to wake her up, but she was pretty uninterested in swallowing. The speech pathologist (wisely) decided that we should back off and not risk setting her back in her therapy. She’ll be having another swallow study called a FEES, but that requires going through the nose (which is one of the main reasons we’re opening her nose up next week).  She zonked out about five minutes after that and slept hard for the next few hours.

We were then able to meet up with a CHARGE mama that I’ve “met” online. Their little guy is six months and is scheduled to go home next week. It was so nice talking with another mom that “gets it”!  We had such a good time just sharing our stories.

Then we had to rush up to our next appointment because I had it in my head that it was at 2:30 and not 2:00. Oops. This was a consult with anesthesia, a chance for them to ask question about Evie and for us to ask questions about their procedures. It went well and Evie loved showing off in her walker up there, too.

We were done for the day with appointments, but ran up to meet the little six month old CHARGEr! Wow! Talk about blown away. He is just so interactive! He makes eye contact, grabs toys, laughs at his daddy, smiles at his mama. Just amazing. Evie didn’t have nearly the time in the hospital that he’s had, but she took a long time to warm up to us and start interacting like that. I’m just so excited for them to get him home! So please be praying that he stays healthy and doesn’t decide to throw any more curve balls at them! Oh, and I should note that the whole time we were up there, Evie just toodled around in her walker having the time of her life!

Today Evie has two appointments. First at 8:15am she has a CT scan of her chest to look at her airway anatomy.  They like to do this the day before the scopes so they know what to look for the next day.  She will be under general anesthesia and I’m not thrilled about anesthesia two days in a row, but the anesthesiologist said the time under is a more important factor than the frequency (not that you’d want to do it every day!). Both procedures are fairly short, so she shouldn’t be under very long total time. We got up a few times in the night to give her feedings so that she’s not running on an empty stomach today, so we’re pretty worn out (and we’ll have to do this again for tomorrow’s procedures as well).

We then can just hang out until her next appointment at 2:30pm. This will be her consult with the GI and pulmonologist who will be doing scopes tomorrow. They’ll want to know more of his history and issues so they know better what to look for tomorrow.

Please pray for Evie while she’s under anesthesia. I’ve said before that CHARGE kids can react unpredictably to anesthesia and sedation, so even though Evie has done well thus far, we still don’t like putting her under one bit. Pray the CT scan goes well and they get a good picture. They are also tacking on that angiogram (and possibly the sedated echo) to have a look at her heart so please be praying for that (I’m not sure how I want you to pray there. I do NOT want them to find a problem, but if there is a problem, I want them to find it! We’ve been so uneasy about her heart and I just want things resolved one way or the other. So I guess if they don’t find anything, pray for our peace of mind.). Continue to pray that we don’t get sick, especially with how little sleep we’re getting. And maybe just start praying now for the scopes being done on Wednesday. I’m very nervous about what they’re going to find.

Thank you again everyone!

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