April 30, 2020

So, here's the thing. Most people don't think this is normal. But I do. I have a great deal of photos of Shannon in a variety of adult onesies pajamas. She wears them with pride. Tiger, Batman, Unicorn...she doesn't care who sees her in them. I have very fond memories of a trip to Home Depot several years back. I told Shannon we needed to go there, she put on her high tops. I asked if she was staying in the car, and she said "No! I''m not ashamed Mom. Are you?" "You do you, Shannon." So off we went. When people looked at her weird as she walked down the store aisles, she gave them a look like THEY were the one dressed different. It was very entertaining to watch.

Fast forward to the last few weeks. I've had a LOT of odd conversations with Shannon. Phantom bacon eating, thinking some strange people are in her room trying to kill her, asking what she's doing with all the pot(s) in her room when the plants die.....So today, when she sent a text that went something like this, I wasn't quite sure how to take it. "I know it's not the time to be looking, but I'll probs be here for Christmas. And I would like to acquire a panda onesie. I'll start looking for one online". (we all get new pj's on Christmas Eve) Which part of that was confusing? Well, of course she's going to be here for Christmas. It's still a bit confusing to Shannon what her life outside of Magee will look like. So, is she just confused about the situation again? Asking for something like a panda onesies and perusing the internet for one so she can make my shopping easier is pretty much on par for what Shannon would be requesting and doing in her free time on any given day throughout her lifetime. So maybe she's confused, but maybe she's getting her Christmas list done. Genius. I hope she put a new toilet and barn door on her list, because that's for sure what she's getting.

Today was a not super fun day like yesterday was, so I guess she only gets one of those per week. She did her therapies, and there wasn't a lot that she reported. She has had her trach capped for the last two days, and is doing well breathing using her normal airways. She did a memory game and nailed it! One thing she told me, and I verified with her case manager that it was correct: They are requesting that the insurance company allow her to stay an additional week. So what started as 6 weeks, and turned into 8 weeks, is now 9 weeks total. She was understandably upset about it. She just wants to come home.

Because she has had shoulder pain, and her blood pressure has been such an issue when she sits up, her therapies haven't been as productive as they were hoping, so she's behind schedule of where they want her to be when she leaves. The good news is that because of Coronavirus, the insurance company is being more lenient with approving her stay thus far, so they are confident they will allow the extension; and it gives us more much needed time to get her space ready. Thing are moving pretty slow on the construction side of things. She can come home before the basement is ready, but that means putting her bed in the living room, making bathroom accommodations in the hallway, and her taking sponge baths. She's not super excited about that option. I want to say I am confident it will all be done in time, but again- I'm not gonna lie. It's taking forever.

Another thing I learned today is that we will be at the hospital with Shannon twice a week, beginning next week! They may increase that during the last week she's there, but for now either Rachael or I will be there twice a week, and Lancer will be going a time or two as well for training.

Also- if Shannon continues to improve with her breathing, she will have the trach removed next week and with that- she regains her ability to leave the room and not be surrounded by the Area 51 crew. She might even get to see what her therapists look like behind those masks.

I called the insurance company today- got straight through to my guy Joe- who kindly volunteered to be my main contact for Shannon's claims, and I got all the info I needed in 20 minutes! So today, the planets aligned. It's kinda fun to hear how crazy this First Class care Shannon's getting is costing the insurance company (not us, thank goodness. If that changes, so will the fun factor). Curious? Well, not including any of her stay for the past month at Magee- claims for just shy of $1,000,000.00 have been submitted. $220,000 was for the air ambulance flight we chartered. I told her it was the most expensive flight she ever flew on, and she slept through it. :) I am so grateful we have health insurance!!!

Shannon is making such great progress, and I am certain it's because of the prayers on her behalf, and the great care she's being blessed with. Please continue to pray for her to regain the full use of her respiratory system so she can have her trach removed, her spinal cord to keep healing and making important connections, for her core muscles to strengthen, her shoulder pain to subside, and her mental and emotional health to be positive. We love you all for everything you are doing for Shannon! She absolutely loves receiving the letters and texts everyone is sending her! Please, keep them coming!

 


And some Disney inspiration:

"Sometimes the right path is not the easiest one" Grandmother Willow- Pocahontas