Outta There

Discharged! Since we were just going over to the Ronald McDonald House next door and Evie’s home care nurse is with me, they let her leave instead of admitting her. She’s doing great! Thank you for all the prayers.

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Yay!

Yay! Trachea was still just as open at 3.5mm, so they widened it to 4mm which makes it the same size as the rest of the airway. Nose was still wide open. Right ear tube fell out, but hole is still open, so they’ll just leave it and watch it, maybe fix it down the road. They’re still wanting to keep her overnight, but we’re hoping we can change their minds. 🙂 waiting to see her now.

We’ll do another check/dilation in 2 weeks, but then maybe get to stop at just 3 if it stays open!

#2 of 4

They took Evie back not too long ago.

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She was pretty anxious with the last procedure so we asked about doing some meds to help her relax. It made her very mellow so she didn’t fight or hold her breath. Hopefully she doesn’t even remember it.

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“Dude, my hands are huge.”

Laughter

There is nothing more wonderful than hearing the laughter of your child.

 

I’ve been thinking, too, about how one of the things I’ve long grieved with Evie was missing out on all her little newborn sounds. Never in my wildest dreams did I think I’d get to enjoy them 33 months later, but Evie sounds just like a new baby with her little noises. It’s just amazing. G0d is always good, but I so love when He gives us these little gifts, especially gifts we thought were lost forever.

Next tracheal dilation is on Monday around 9am. We’re hoping this one will be outpatient so that we can go home on Tuesday.

Discharged

Evie’s been discharged and is doing great! Really great. Very minimal bleeding, hasn’t needed any Tylenol since yesterday, and is back to her usual self. We’re hopeful that the rest of the procedures will just be outpatient since she did so well with this one. Thank you all for the prayers!

Dilation #1

Dilation went well. She had actually closed up a bit more from the last scope and they had a very tight fit with a 2mm tube. They dilated with the balloon and we’re able to get it to where a 3mm tube fit loosely through. A normal 2 yo would have about a 4mm opening for perspective. They expect that it will shrink up again, so it’s kinda 5 steps forward, 2-3 steps back. Goal at this point would be to get her to 3.5mm by the end. We also downsized her trach to a 3.5 (she was at a 4) so that she can get more air through her mouth.

We’re waiting to see her now.

Monday and Updates

This coming Monday, the 10th, Evie will have her first of four tracheal dilations in Cincinnati. We’ll go in every 2 weeks, then have a 6-8 week wait until we do a scope and determine if the dilations worked well enough to avoid a full tracheal reconstruction. We very much covet your prayers on this one. A tracheal reconstruction is not something I want to put Evie through if possible. We feel optimistic about the dilations, though. Her ENT gave a 50-75% chance of it working and he knows his stuff. There’s really nothing more encouraging than researching these procedures and seeing Evie’s doctor’s name pop up in nearly every article. She is in very very good hands.

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Hanging out while she gets fed.

A few quick updates on how Evie’s been doing:

Walking: Evie is probably walking 80-90% of the time now which still surprises me! I feel like she all of a sudden started walking, but in reality it has been about a year since she took her first steps! She’s had a such a rough year of surgeries and sickness and setbacks, so it’s exciting to watch her FINALLY get to this point. And it’s really not a finally, since the average age for walking in CHARGE kiddos is 3 years old.  She’s getting faster and more coordinated all the time, but her balance still makes it difficult for her. She needs to focus on what she’s doing and tips over a lot. Lately, she’s decided to walk around with her hands on her hips, but she tends to drift to one direction or another then instead of walking in a (relatively) straight line!

Vocalizing: Evie is actually vocalizing without the speaking valve when she cries now. I think the speaking valve helped show her that she COULD move her vocal cords and make noise so now she tries even without the valve. That seems to be the only time she can get enough air past her vocal cords with or without the speaking valve, though. There’s just too little space in her trachea (due to the trach itself taking up so much room) and the tiny opening at the top of her trachea, so she really has to be breathing hard to force air up through her mouth. Hopefully after the dilations, she’ll have more success. We’re still absolutely loving the sound she IS making, though.

Communicating: Evie continues to use sign language and her Speak For Yourself app to communicate with us along with her blowing raspberries babbling and singing. The other night she wanted to say goodnight to Aleyna, so she tapped her name on the app, signed her name, then “called” to her with blowing raspberries. She’s amazing.

Being silly with big sister.

Being silly with big sister.

Health: She’s been staying healthy since about Christmas which seems like forever! We’re hopeful we can get through the rest of winter without any more hospital stays, but you just never know. We’re mostly hoping we don’t have to postpone any of the dilations due to sickness!  She’s finally starting to grow more steadily, too, after the constant back and forth, gain and lose, of the last several months. She’s getting close to 24 pounds now and so much taller!

Snuggling a baby while she plays a game.

Snuggling a baby while she plays a game.

We will keep you updated on Monday.  She’ll be kept overnight for observation since there’s generally quite a bit of bleeding with the dilation. Fun, right? Hopefully it will just be the one night, though, and then we’ll be able to head home for a week and half before turning around to do it again…three times. Along with prayers for Evie, we’d appreciate prayers for Ty and me, for energy as travel so much.