Updates for Zoie

This girl started her first day of 7th yesterday. Her summer was a TINY bit boring, after recovery from surgery, so she was ready to be back with her friends ❤️❤️

Swelling in her face is going down, and the skin tears from the tape by her eyes are almost completely healed. She's in good spirits ❤️

I forgot to post yesterday due to so the chaos (and driving) and spending time with our family, but SOMEONE WENT HOME YESTERDAY!!! It's hard to explain the care.... It's both different and not. But we are so happy to be home! *Edit to add: her chair IS safe for travel and will work until we get a new one, which couldn't happen until after surgery*

A happy girl. Still pretty swollen, but definitely bright eyed!

I wanted to update everyone before it gets late - check in was at 0500, and they took her back by 0700. Just before 0900 they started the procedure. We were updated regularly everything was going as planned. About 1645, the doctor came in to tell us about the surgery. Fortunately, the surgery was "relatively uneventful" - which is good as far as surgery goes. We got up to the room with her about 1800, and she finally opened her eyes just a little bit ago... And promptly went back to sleep. She is on CPAP, but everything went well. Long day for everyone! (Pre-op picture, way too early this morning)

Happy Mother's Day to all Mama's out there!! Also... Tomorrow is the day. Please keep Zoie in your thoughts, prayers, and good energy as she has her surgery!

We got word earlier this week that Zoie's scoliosis is progressing. It's increased by 20° in 14 months. We have been going through multiple appointments over the last year to see if she needs/is a candidate for this surgery. We got word yesterday that this surgery is needed/recommended, it's not known what her spine could do in the future, but it won't correct, and Zoie's health *could* change (this is always a risk with her) and as a result she could potentially no longer qualify. I had been looking into another surgeon as well, if even for a 2nd opinion.... but that would involve longer travel, likely a long wait-list, and starting the procedure over. This surgeon I know is good at what he does. We may not have initially clicked personality-wise, but I'm not denying his skill set (nor my anxiety). I had a bunch of questions, and he came prepared with all the answers. We decided we should move forward with the surgery. We had a much shorter window than expected, and she is having this surgery next month. It's a complex surgery, and a long one. This is an example of her spine (hers is different, and actually slightly worse) and what they are going to be doing to it. I'll keep everyone posted as time goes on. 💗

Not 100% - but better than yesterday. Cute as always.

Welp, Zoie is sick. She's been fussy all day, congested, and now she's throwing up. No fever, so I'm thinking it's not influenza 🤞🤞🤞🤞 influenza hits her hard. We also did an at home COVID test, which was negative. Dr prescribed an antibiotic. Praying for a short lived bug.

Today in my town, an almost unimaginable tragedy happened. Two precious babies passed away. - I do not know the families of either child, but they each have a go fund me page. I'm sharing them, if you feel so inclined to donate or to share. And of course, prayers for the families. And when you're praying, please include the first responders, including the dispatchers who did everything they could. 💔💔💔
(Edit to add, please do not interact with anyone who messages you personally about "your donation" - unfortunately there has already been one scammer attempt. That individual was banned from the page. Zoie's page is not a beneficiary, nor are we an organizer, so this page will not contact you for any reason related to these go fund me accounts.)

https://gofund.me/3051b37c

https://gofund.me/b8d556a1

11 years ago. It's been 11 years since Zoie went into her full cardiac arrest. 11 years since I was told to start planning my goodbye.
This time of year always hits me like a slap in the face, but I have learned to celebrate it and celebrate the twins, and especially Zoie on this day.
Today while the kids are at school I'll distract myself, while Zoie enjoys a day with her friends at school, eating frosting AND going swimming. (Jaxon has a normal day 😅) Tonight, we will celebrate Zoie, and tomorrow, she has her very first "play date" with a friend from school.
Zoie loves her school, her friends, her animals, and her family.
11 years later there are still no words that can express the gratitude for everyone who had a part in saving her life that day. ♥️

A few 5th grade and D.A.R.E. graduates. Mama isn't ready.

She's on the upward swing of this stomach bug, but still pretty wiped. Hopefully after tomorrow she will be better like her brother! ❤️

While we were waiting. (One med makes her pretty sleepy)

We are home! Zoie is much better, not yet 100% but that will take some time. Focusing on feeding and hydrating.
Moving forward, she has appointments to include a camera to see what's going on in her stomach, and some temporary meds based off what was going on.
She is still coughing up mucus, lingering from the flu, and we are keeping up with clearing that. She's not contagious, and hasn't had a fever for several days.
Fortunately, she did NOT develop pneumonia. Her lungs were clear. She didn't develop any other infections, and she wasn't septic. She WAS both coughing up and vomiting up blood, which got progressively worse when we got flown out.
Zoie and Mama SO exhausted. This was not her first hospital stay, not even her first (or 2nd) life flight. But this went from "a little more than we can manage at home" to "we are ALL scared with what is going on" pretty quickly.
I will say our experience at the ER at Children's last week, and the 2 at our local ER before getting flown out were excellent. We were very fortunate. And we are so thankful to be home for Christmas. ❤️

So, no discharge for today. We discussed possibly later today, but we want to get everything squared away and comfortable before trying to leave, and we thought we should take the day and see how it's going. I think we are doing ok. She is definitely managable, and she's definitely feeling better, we just got to get feeding to a point we are all ok with. Being sick and not eating much, and out of her normal 💩 routine, that's been a little tricky, but we are getting things moving now. We agreed on discharge being early tomorrow, but, it is Christmas Eve. Pray for early. We want to be home for Christmas.

We made it to Omaha around 3am Wednesday morning. We have had fantastic care. The influenza part is manageable at home, (and honestly, I think about over, thankfully) the coughing and vomiting up blood was not. Pulmonary + RT and GI have been working with her a lot. She had a much better night last night, and has been doing well today, just some coughing. Cross your fingers, we are starting her on some continuous feeding to get her calories today. If she continues to do well with that, they will stop the IV fluids, and do bolus feeding tomorrow. If she tolerates those, we may be able to go home. Hopefully in about 4 weeks, we can get a probe done through GI with a camera, so they can see WHAT is going on, and treat it accordingly. Her lungs, chest XRay, blood work, all of that are and have been clear. No bacterial or aspiration pneumonia. The UTI seems better, but still being treated. She also got a FANTASTIC massage today that she loved. Thank you all for the continued prayers and support. ❤️

Update: Zoie went from improving, to not so much over the course of a few days, so we are currently waiting to get flown out.

Quick update: We got Z settled down and comfortable by midnight. She slept GREAT (which means we slept pretty good too) and so far this morning, she is doing better than yesterday morning. Still very slow, but only one nausea med so far. Antibiotic down, settled. Normal meds down, settling. Liquids, slow constant and steady. After the morning meds settle, going to try some food and steroid - might need the other nausea med for that. We shall see. Thank you all for the continued prayers and support ❤️

Still not feeling great, but goodness she's cute after her epsom salt bath ❤️ she did keep down a pouch of food and a little fruit, and quite a bit of fluids. She kept down her antibiotic and steroid both times today. HOPEFULLY that kicks in tomorrow🤞

When it rains it pours, little miss has a UTI. So another med for her. It's been a very slow morning, doubled up on anti nausea meds just to keep meds down. And HOPEFULLY start her back on some actual food. She's hydrated. But she needs food. She's been getting enough to take her steroid, but she needs more. This child is a fighter, but this mama needs a nap. ❤️

Didn't get to have her GI appointment (again) and didn't get her hip injections, but instead got Influenza A. Spent a lot of time at the Children's ER, but we are now homeward bound. ❤️

Because LOOK AT HER 🥰

First day of 5th grade. Last first day of elementary school. ❤️

We are home, Zoie is sleeping. We are following soon. A long day, what was supposed to be 3 baby teeth became 10. She's not acting uncomfortable at all, so I'm going to call it a win. Thank you for all your thoughts and prayers! 🥰

10 baby teeth removed. She has been taken to recovery. Hopefully she wakes soon!!!

We are checked in and waiting for surgery. Water logged and ready to go.

This week, Zoie is having a minor procedure to remove some of her baby teeth. Where she doesn't chew regularly, her adult teeth are growing over her baby teeth, and the baby teeth are locked in place. It's a "minor procedure" but thoughts, prayers, good vibes, all that would be appreciated. This is going to be the longest she has been "put under" and she does tend to go bradycardic. Thank you all!

And just like that, we are 10!!

So a little over a week ago there was a huge dust storm. It's the only thing I can think of that is causing respiratory issues with Z. They postponed the procedure she was supposed to have yesterday, and she's currently on nebulizer treatments and a steroid to try to get ahead of this. The thing is, her lungs are clear. She just finished some antibiotics, she hasn't had any fevers, and it picks and chooses what days to happen. She and I are both currently wearing her phlegmy puke right now. She acts fine most of the day, then suddenly there's nothing we can do to stop it.