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KWTX- Nov 2019

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Anyone else have a freshwater aquarium? #ad While

Have you ever just missed someone so much that whe

Have you ever just missed someone so much that when you see them again you want to Velcro to them?

That’s how Lawson has been since Addie has been discharged from the hospital. He keeps giving her kisses, climbing up beside her and saying “Hi Sissy,” and even has been wiping her sweet face. It makes me so happy to see him love her the way he does. He is learning to be such a sweet and compassionate brother.

As for Addie, she’s been doing amazing. We started back up with therapies today, got her registered for FIRST grade, and she had a follow up echo done on her heart today (and the cardiac sonographer had nothing but praise about Addie’s ASD repair and how good it looked.)

We will still allow Addie to take things easy for her eternal precautions, but it’s safe to say she can absolutely handle getting up and doing some of those fun arts and crafts you all sent her!

Regular clothes? Wheelchair? This could only mean

Regular clothes? Wheelchair? This could only mean one thing!

ADDIE IS DISCHARGED!

We weren’t sure this morning if Addie would be discharged thanks to higher CO2 numbers BUT with some ventilator changes, her CO2 went down and she is doing so well. She tried to pull a fast one, but the Pulmonologist is faster! Lol.

We are praising God for this incredible recovery. Coming home a week post-op is definitely not the norm for Addie, and we are so thankful that she had such an easy recovery. We also want to thank you all for your incredible amount of prayers, thoughtful gifts, texts/phone calls, and so so much more. You all helped us so much with this by keeping us sane and calm!

And with that- we are making the 1.5 hour drive home and getting this girl settled!

Look who is in her chair! Addie has had a BIG day

Look who is in her chair!

Addie has had a BIG day today! She got her wound vac out shortly after breakfast time, and then started PT by getting in her wheelchair! She is absolutely rocking it too!

Later today Addie will go for an echo to take a look at her heart and then we will see what tomorrow brings 😉 (we don’t say the actual words about h-o-m-e because Addie usually tries to throw a wrench to plans like that.)

All in all, today is a very productive day for Miss Addie. So proud of her and her progress! God works miracles on this kid!

Did someone say step down unit? That’s right- A

Did someone say step down unit?

That’s right- Addie is in the step down unit of the cardiac wing and doing well! Addie has a few more things that need to happen for her to come home: get her wound vac out (tomorrow), have good looking blood gases with decent CO2 levels, and tolerate being back on her normal vent settings. She’s so close!

From a heart standpoint, cardio is SO happy with her. Once her wound vac comes off tomorrow they will do an echo on her heart and check that all is well, but they’re very happy at this moment.

The big thing is really her lungs. We need Addie to tolerate her original settings or at least have good blood gases with the current settings (and then wean at a later appointment date post-op.) Sedation meds and hard pain drugs really mess with breathing, so it just is taking Addie a while to get back to norm. Still, with not even being a week post-op, we are all so impressed with her.

Addie even had therapy today and sat up twice for a few minutes at a time. Great progress! Hoping tomorrow we can attempt to let her sit for a few minutes in her wheelchair during therapy once the wound vac is out.

All in all, really great day. Addie has been doing so well in the step down unit. I’m so proud of her!

How we feel about Addie being in the hospital 😂

How we feel about Addie being in the hospital 😂 lol

Miss Addie has had a great day today. If you read yesterday’s update then you know we needed to be praying for poop. She finally went in the middle of the night and again in the morning, and it’s made all the difference for her breathing. She was able to get back onto her home ventilator and that makes for a very happy mommy!

She lost an IV today but thankfully they still have access in other places, and she only needed one PRN dose of pain meds today (her first dose in over 18 hours.)

Her nurses brushed her hair today and took out her little braid. I’m loving this side pony they gave her and I’m pretty sure this is a whole new look we need to be doing. So. Cute.

Overall there hasn’t been too much to report, and that’s a good thing. We are really just needing her blood gases to stay at an appropriate level and for her BMs to stay consistent. Once that happens she will be able to move out of CICU to regular recovery and then start talks of home. Addie likes to move slowly, and we anticipated this, so we will just take it day by day, at her pace. Thank you to all of you continuing to pray. Your prayers mean so very much to us!

Well, we are still in CICU... If you missed the d

Well, we are still in CICU...

If you missed the drama last night in Stories, you may have missed that Addie had a plug in her trach that sent her oxygen saturations all the way down to a terrifying 11. It required bagging and a swift trach change, and definitely scared everyone for a moment there.

The trach plug did help the team realize that it may have attributed to her high CO2 levels though. They had been able to turn her rate down on her vent to 20 (how many breaths per min she takes) but her blood gases went back up. By afternoon, Addie was put back on the hospital vent. Definitely a set back.

Addie also hasn’t had a bm in many days because of surgery and all the meds. They’ve tried a few things to get her to go potty, but once she actually goes, her CO2 should go down even more and allow her to get back on her vent.

On the bright side of things, Addie has been a LOT more alert lately. I’ve seen her awake several times today and that is great. Her pain is being managed well, and she is handling everything else so well. Not only that, but this kid has some crazy awesome guardian angels that kept her alive with that whole trach plug situation yesterday.

All in all though, this kind of recovery is what we expected. Addie isn’t a typical kid, so a typical recovery isn’t something she ever does. We have to give Addie time to feel better without rushing too much, and that’s ok. Please keep praying for her and us. They really do sustain us and we are so grateful.

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