April 3, 2020

Update by Kim

Yesterday Shannon's team of doctors, therapists, and decision makers met to discuss the results of her evaluations and make a plan for her while she is at the rehabilitation facility. We got a call today from her case manager to discuss them. I wish I could have just one conversation that doesn't lead to my mind trying to process *it all* without leaving me a bit overwhelmed (or, like today-- completely). There are lots of little things we are finding slipped through the information cracks at her previous hospital. I know that for the most part it's because the healthcare system is in crisis mode right now. I am happy they cared for Shannon- and am happy they had taken good care of her rather than made their major focus informing us of everything going on with her. And honestly, we knew enough to keep us going through a loop on a daily basis. We really didn't need more information. But now we are learning things we didn't know, and they talk about it like we did. There is a lot of "pause, what did you just say?"

The main part of her plan at her rehab is to learn to breathe. I know it sounds like Shannon is doing so well. And she is- compared to almost 3 weeks ago when none of her vital organs were working right. But we learned today for a certainty that her inability to breathe on her own is a spinal cord injury issue. At Jefferson, we kept getting conflicting thoughts on whether it was because of her contusion, broken rib,  and pneumothorax condition- and then complications of being intubated, pneumonia, etc. It was mentioned that it could be from spinal injury, but they weren't calling it that, yet. So now they know she doesn't have good use of her abdominal and chest muscles required to breathe. She may need to still use a ventilator when she comes home, but they are hoping that won't be the case. Her Respiratory Therapist works with her every day, but so far, Shannon can't go more than two hours at a time without ventilator help. It's just too exhausting and difficult.

They are also planning to work on strengthening her arms, and improving fine motor skills with her; as well as helping her be mostly functional in her every day care. At this point, she will come home with a wheelchair, which they are hoping won't have to be an electric one, will most likely still have a trach, and perhaps the ventilator. She will continue with outpatient therapy when our insurance will no longer allow inpatient. We are hoping to push that to the two month mark. I'm writing this now, so that when Shannon proves to them all that she doesn't mess around and far surpasses all of their expectations in her abilities, I can go back and see where they thought she should be. Shannon's a fighter.

When we talked to her today, she was so tired. She didn't have much to "say" but part of that was due to her not having anyone in the room that could translate for us. I had talked with her hospitality consultant earlier and she gave me and update on what Shannon was up to. She had done some speech therapy to try to learn to talk with her trach, she did a couple of hours weened off the ventilator, and occupational therapy had helped her use her iPad, assisting her with logging into some of her online accounts. But the best part of her day- which I asked Shannon about, was the chair. Today she was in an electric wheelchair with a joystick for several hours....and she LOVED it. She was driving all over the hospital, up and down the elevators, with a big smile on her face. I told her I heard she was Mario Kart today, and she looked at me weird before it clicked what I was talking about. She nodded and laughed :) The photo above is from Shannon's Mario Kart for a youth activity at church a while back. Very fitting for today.

She was also able to talk with her sister Rachael and her family today. Rachael told me it was the first time she let her girls just go to town with their monologues she usually tries to curb when they are talking to people. Since Shannon can't respond, and didn't have anyone helping translate what she was mouthing, watching CNN of Rachael's girls was perfect.

It's been a long exhausting day for her, and for us as well. We are looking at what options we have to retrofit our house for accessibility accommodations and now have remodeling planned for the next several weeks. Good timing, since all the contractors are on lock down. Happily, we have Rachael's talented husband Tyler to help us with that.

Tomorrow Shannon has a lighter day of therapy, and Sunday she has the day off, which she's super excited about. We are really looking forward to the weekend as well. Like most of you, we haven't been able to go to church for weeks, and this weekend is our church's regularly scheduled worldwide General Conference. I can't wait to just relax, stop thinking about the crazy that has taken over our lives, and be uplifted. You are welcome to watch it from your own homes, no matter what denomination you are. https://www.churchofjesuschrist.org/broadcasts?lang=eng

Please pray that Shannon will regain the use of her muscles so she can breath on her own, that she will continue to progress in her therapies so she can be independent, and that her spinal cord will heal. Pray for her to have peace and comfort, and to have the stamina to do all the necessary treatments to overcome her limitations.

We are really loving all of your thoughtful comments and text messages, even if we haven't responded to all of them, know that we can feel your love and concern. Little messages from all of you really buoys us in these troubled waters. And I am especially grateful to those few of you who have felt promptings to share something with us, or connect us with someone who can help us at this time. It's not always easy to share those things, but we have felt God's love in all of it! Miracles continue to happen, and we are positive we haven't seen the last of them.

The last several times I've called to talk to Shannon, she's been sleeping, so we left her that way so we didn't encounter this:

Kronk: "Yzma!"
Yzma: (woken from her sleep without her wig on and cucumbers on her eyes) "WHAT!"
Kronk: (shocked by her appearance) "AHAH!!"
Yzma: "This had better be good!!!"