April 14, 2020

Ever since she was able to put food into her own mouth, Shannon has loved her treats! She was the kid who dumped out the cocoa envelope and picked out all the marshmallows, she would sneak everyone's Halloween candy and stash the wrappers, she stole bites of cake, spend all her cash on goodies and junk food. She doesn't really have a sweet tooth...it's more like a mouth full of sweet teeth! But to be fair, she also loves steak, sandwiches, mac n cheese, a good quesadilla, and the like. Not being able to eat recently has even made her dream or perhaps hallucinate about eating (See April 10). But today she graduated from oatmeal and bananas that her speech therapist has been feeding her. TODAY she ate----- Cotton Candy!! And she was over the moon happy! Rachael was putting snacks away in the pantry the other day and had a bag, and I told her I had wanted to give some to Shannon for Easter but didn't think they would let her have it. Yesterday when we dropped things off, Rachael donated the bag to the Shannon cause!

That's not even the good news!! The good news is that today she had her Swallow Study- in which the put contrast in her food and take her to radiology to watch it go down- kinda like a live x-ray. It was all going right to her stomach, none in her lungs. Which means she can now eat real food. I was able to FaceTime her with her Speech Therapist when she was eating her cotton candy, and she explained that the plan is to keep the feeding tube in for nutrition, but Shannon gets to eat for pleasure, and also to practice for when she is eating for nutrition. She also explained that because Shannon still had a trach, and doesn't breath through her nose (more on that in a moment); she doesn't get that hungry, so she still needs the feeding tube or she wouldn't eat enough to sustain herself. I had no idea- but apparently the hairs in your nose when you are smelling help trigger the brain to make you feel hungry. Who knew. Maybe if we all just stop breathing through our noses, diets would work better?

Tomorrow she gets to choose what she wants to eat for breakfast, and I'm betting it's pancakes! By next week, she should have worked up to a sandwich. I already know what I'm dropping off to her next Monday!!

In other good news- since noon today Shannon has been breathing 100% room air!!!! The next step is a speaking cap for her trach that will allow her to breath in through her trach and out through her nose/mouth which will also, as the name suggests, help her learn how to speak again. Her vocal cords need to be retaught how to make the appropriate noises used in speaking. The eating helps the muscles get stronger for speaking as well.

Today I've been thinking about the last 4 weeks and how far we've come, but more importantly how far Shannon has come. 4 weeks ago today, at 2am we were turned away from entering Jefferson hospital because of Covid-19 restrictions after a highly stressful two days of finding out about the accident, flying to Iowa and fighting to get her back home to Philly.  We spent most of the day at Lancer's office- across the street from the hospital, waiting. No one was telling us what was going on, because her spine surgeon Dr. Alex Vacarro was fighting hard to get her into surgery despite all the restrictions, and no one was assigned to keep us in the loop. We knew she might have it, because we gave them verbal over-the-phone permission to do it. But we didn't know if she was having it, or when she would. She did have spine surgery, 4 weeks ago today. She flat-lined during surgery, 4 weeks ago. None of her vital organs were working properly, and she had brain injuries 4 weeks ago. We didn't know for sure if she would live, 4 weeks ago.

There are a lot of things we haven't shared here on the blog about her initial condition, or the details of the ups and downs we've been living through; mostly because when we had spoken about it to others, it was overwhelming to them and there was a lot of fear. Hearing others express that anxiety and fear just added to our own distress. So we saved the details, and just let everyone know the basics and what she needed us to pray for. I think in doing that, most people don't understand HOW. FAR. SHE'S. COME. Shannon almost died-she was in a near-fatal car accident. She did die, on the operating table having spine surgery. Every day for the first two weeks, she was literally fighting for her life. Being in a Surgical Intensive Care Unit almost always means you can't live on your own, you need life support. Just getting her past needing the SICU was a miracle. Just surviving ONE of the four life threatening injuries to her brain, heart, lungs, and spinal cord is a miracle, is amazing. But she's lived through all four of them. Shannon will be reading this later, and I want her to know how Strong she is. What a Fighter she is. How much God is blessing her. How she needs to keep fighting and getting stronger, and trusting in her Father in Heaven.

Now she fights to live a good life, a fulfilling life. One where she can breath through her proper airways, be independent, maintain her proper blood pressure, be able to take care of her own daily tasks and maintenance- and eventually walk again. She's not there yet. It's a ways down the road. But the last four weeks shows us that she has the fight in her. She is pushing hard. She's fast tracking all of her injuries and overcoming with a speed that can only be attributed to Divine Intervention.

Because of Shannon's brain injury, and most likely from when she flat-lined, she can't remember things from day to day. Thus the calendar. Thus the repeated explanations about what happened. Today, while talking about her upcoming appointment with her spine surgeon, I mentioned that she had broken her back. She said "I broke my back?". I explained again that it was injured in multiple places, and included injury to her spinal cord which is why she can't feel her legs. We've talked about this many times before. But it's hard for her to recall it. So we tread carefully and remind her how far she's come.

Meanwhile- we celebrate the little accomplishments, the fun moments. The cotton candy days. Please join celebrating those accomplishments with her! Send her a note, a text, a funny story. She's isolated more than any of us are. I waved at her Physical Therapist from the doorway of Shannon's room today while I FaceTimed Shannon. She couldn't come in. Shannon's speech therapist was with her already. I told Shannon she can't come in because she's not wearing blue- and everyone has to wear blue to be with her. (and a mask, and face shield, gloves, shoe covers, etc) Isolation is in fact very isolating.

Please pray for Shannon to continue her remarkable progress with her breathing and her ability to swallow, to gain the ability to speak again, to be free of infections, for her spinal cord to heal, for her strength and mental well-being. Pray that she will not be lonely, and will feel the love of her family, friends, and most importantly her Savior. Thank you. :)

- Kim

After making her calendar for her, I thought it would be fun to include her daily meme here for you to laugh along with her.

And of course, the regular Disney Banter. Shannon gets to order her meals ahead of time, hopefully that goes better than this:

[Yzma and Kuzco are ordering meals from Kronk. When one exits, the other enters, so they never see each other; Kronk meanwhile thinks they are making the same order.]

Yzma:
While you're at it, make me the special. And hold the gravy!

Kronk:
Check. Pickup.

Kuzco:
You know what? On second thought, make my omelet a meat pie.

Kronk:
Meat pie. Check.

Yzma:
Kronk? Can I order the potatoes as a side dish?

Kronk:
I'll have to charge you full price.

[Yzma growls in annoyance]

Kuzco:
Hey, how about a side of potatoes, buddy?

Kronk:
You got it. Want cheese on those potatoes?

Yzma:
Thank you, Kronk. Cheddar will be fine.

Kronk:
Cheddar spuds coming up.

Kuzco:
Spuds yes, cheese no.

Kronk:
Hold the cheese.

Yzma:
No, I want the cheese!

Kronk:
Cheese it is.

Kuzco:
Cheese, me no likey!

Kronk:
Cheese out.

Yzma:
Cheese in!

Kronk:
Ah, come on, make up your mind!

Kuzco:
Okay, okay, on second thought...

Yzma and Kuzco:
Make my potatoes a salad.