Daily Bread

On my list of ‘Things I Never Thought My Child Would Do’, I’ve got something new to add, and I have a feeling it is uniquely mine. 

Ava accidentally hurt her thumb by chewing on it.  

She was buckled in the back seat of our car and was wearing a new brace that covers most of her thumb so she didn’t even realize the harm she had done until we took the brace off to shower.   She began to scream and feels very badly about doing it. 

I won’t post a picture of it because it’s all red and puffy and the skin is broken in multiple places and you probably just ate supper.  

 

This is Ava after her shower tonight. Her face has healed incredibly well; and we are feeling so thankful for that.

 
I made an emergency phone call to the orthopedic resident on call from Cincinnati Children’s and he said that she was definitely going to need an antibiotic if the skin was broken.  I always like a second opinion and since I have a sister who is a doctor (everybody should have one of those), I called her even though I knew she had just finished a stressful day at work.  She affirmed what I had been told:  because of the bacteria in one’s mouth, human bites nearly always need antibiotics. I have calls and emails in to her brachial plexus team in Cincinnati but haven’t heard much back.  

So, Ava is on a pretty heavy antibiotic that is upsetting her tummy and if her thumb looks any worse or she spikes a fever, I will be bringing Ava to Sioux Falls Children’s Hospital to admit her for an IV for a while. 

It’s been a pretty tough turn of events for me. I had been really working hard on her range of motion exercises and doing my best to massage all 12 of her scars for 2 minutes each, twice a day. I can’t say I hit that goal every time but they just seem to be healing really well.  Both Joe and I, even all of our kids, we are so relieved that have this surgery behind us.  In lots of ways, we felt like things could only get better for us going forward. 

 

Ava hurt her thumb while returning home from a trip to my sister’s family in Staples, MN. My parents were able to join in on the fun at her family’s orchard and garden. Here’s a picture of my Dad, finally relaxing after many years spent working on the farm.

 
I guess this is a lesson in asking for daily bread, and trusting that the Lord will give us what we need, day by day.  Not to get ahead of ourselves.  We have just had so many great days that this a real wake-up call for me.  

The surgeon that we met with in Cincinnati 10 days ago danced around my question of “What is Plan B — if after waiting for some shoulder function to return in 6 months and some bicep/elbow function in 9 months, if the nerves haven’t regrown an inch a month / a millimeter a day like we had hoped?”.  After a pause, she says, (and I have it on my Voice Memo App….such a wonderful tool to have at doctor’s appointments) “Soooo, this operation virtually always works.”   That is sure taking a lot of confidence in her work.  She was able to redraw Ava’s operation onto a piece of paper (that she quickly put her signature on as she handed it to me, kinda like an artist).  She showed me more clearly than ever before, how these surgeries work.  I hadn’t really understood the concept of taking 3.5-4 centimeter lengths from the sural nerves of her legs to bundle them to bridge across.  Some of it was used to connect the spot from where her good C7 ended after it was threaded through her neck, and then they glued the other end of that length on to where her non-functioning C8 and T1 nerve endings were exposed after sorting through the scarring. The other sections of sural nerve were used in a similar fashion off of her C5 nerve that wasn’t avulsed by her accident. I hope that makes some sense. 

Anyhow, I guess this is just a bit of the roller coaster of life lately.  Super good doctor’s report followed by an odd infection.  Sometimes it seems like you got it all together only to be reminded a day later that you are an imperfect mess, right?  In any case, today marks one month since we checked out of the hospital following her nerve surgery — that’s approximately ONE INCH (!!!) of nerve growth and I’m treasuring each millimeter. 

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2 weeks after surgery

2 weeks after surgery

“How is Ava doing??”.  I have been asked this so much, and it means a lot to us.  I have been delaying updating my blog (which I truly apologize for) because she just changes all the time. 

 

‘Sural nerve stealing’ incisions. Thankfully, doctors who work on nerves start their training in Plastics. They know how to hide an incision in a skin fold.

 
For all the hours of anesthesia, I think she popped back up pretty well.  We stayed 2 nights in the hospital, 1 more night in Cincinnati, and then one in Wisconsin.  She took Tylenol regularly, albeit unwillingly for 5 or 6 days.  Also, she had some oxycodone, especially at night.  She isn’t on anything any more. 

  
Nights can be pretty rough.  I think, more than anything, it is just super tough to adjust herself while laying in bed.  (Try to lay down or pull up to sitting some time with one arm lying across your chest.  It is harder than you’d think.) She kind of gets stuck and panics, and then struggles to calm back down.  Also, for the first 9 days, she kinda hobbled around because of discomfort from the Steri-strip (like a fancy band-aid) that was on her right ankle.   Once that fell strip fell off, I was relieved to know that her unsteadiness wasn’t caused by nerve damage and I could let her play a bit more freely rather than constantly shadowing her. 

  She has 12 scars I massage and apply Mederma or Bio-Oil.   It is so many!!  3 per leg makes 6, one on each side of her neck, one behind her shoulder, and the 3 on her face from falls.  Those three:  one from the initial accident that is above her lip, one under her chin from playing with the goats, and one above her eyebrow from running up the sidewalk to swimming lessons.  Still so beautiful!  

 

A fellow mom of a child with brachial plexus injuries shopped for supplies so Ava could have a second sling in pink and purple, and paid for the cost to make it!  It has been so nice, since we even have to have her arm in a sling while she showers.  Joe’s mom has been helping me each night to get Ava changed into pajamas while holding Frank in place and making sure everything gets a dusting of anti fungal powder just for prevention.  
 

Red-neck silage pile packing??? Just kidding…Joe just checking the pile out.

 
Joe is in his super busy season of corn silage chopping. Usually 16 hours a day for 6 days a week.  Most years it lasts 3-4 weeks and we miss his so much.  We bring meals out for the crew but that is not nearly as exciting as having him around the dining room table. 

Oh, one more thing with Ava. She has become pretty shy lately.  I am hoping it is a short-lived phase but I give her slack for not being very outgoing in public — she has been through a lot, right?  So if she looks down when you ask her how she is, don’t be offended. I think she still gets the feeling that she is loved!

We fly to visit the doctors next week. Joe is staying in the field; Joe’s mom will accompany us.  They will look over her incisions and make a plan for therapy.  Vince and Liv will probably be shuffled in with cousins.  It is a huge blessing to have family so close.  

Right now, we are taking things just a week at a time.  Trying to get back into a school routine and protect her from falling. That’s all.  More updates next week.