Go, George, Go

Frank is the nickname of Ava’s paralyzed flaccid right arm. Somehow, Ava’s left arm (the one that was working perfectly before surgery) has been nicknamed George.  Today, we are celebrating an answer to prayer — George’s abilities are much restored after a pretty scary spell yesterday when she had no function from EITHER arm.   Let the play time begin!


She still can’t walk because of this IV in her ankle area.  So, there is a ton of swelling that she hasn’t been able to work out.  Our time in the play room was fun and a great way to distract her from uncomfortableness.   It is really strange to continuously bring your child toys instead of having them pull everything out in a millisecond.  

  
We hope to check out of the hospital later this afternoon, and will keep our nearby hotel room for tonight at least.  Discharging is always such a huge process and we don’t want to overdo things. 

Before we leave, we are waiting for the nurse that specializes in brachial plexus surgeries to give us a few pointers on things we can do to help specific muscles/functions in her good arm to recover as fast as possible.  Her good arm will more than likely never be 100%, but with these nerve injuries one must ‘rob Peter to pay Paul’.   

We have been treated very well here.  We laugh to think we chose a location for brachial plexus surgery 12 hours from home, because we think they are doing cutting edge things in neuroscience here — yet the rooms are equipped with telephones that haven’t been available in stores for decades.  Violet thinks it is fantastic!

 

These flowers, given as a gift from some of Ava’s 16 cousins, brightened the day of many people on the day of surgery in the waiting area, and continue to do so as we left them as a gift for the nurses. Thanks, Kip and Court!

 
 I can’t begin to list the number of ways that this period of trial has helped me to grow.  Some of the growth has been as a mom to a child in pain and in need of some sophisticated medical care, and sifting through those needs and options. Some has come from being the beneficiary of love and concern from so many people; I feel like I now know better how to minister to others.  Then, there is the grounding of spending a lot of time at a Children’s Hospital.  Toddlers on chemo.  A long line of personalized wheelchairs in the surgical waiting area ready to be of use again.  The burn victim who had clearly been there for months, on a first-name basis with the security cards and treating his traveling IV stand as simply an extension of his body.  

Everybody has a story, and so many of them are very life-threatening, life-consuming compared to Ava’s. Whatever load I bear on any given day, I can look in the eyes of dozens of other parents and see their heavier burden. 

I wouldn’t wish this journey on anyone, and it is a tricky thing to put into words but I guess the best way of saying it, is that I just plain see things differently today then I did 4 months ago.  The lens through which I look at a situation, and the compassion I feel for hurting people has somehow changed. That, too, is something to be thankful for.  I thank God and I thank Ava. 

Surgery day

We walked the 10 minutes from our hotel to the hospital this morning.  No food or drink before surgery is the rule, so it was good to be outside away from the possibility of making a mistake. 

 

Cincinatti Children’s logo behind us on new research building

 
Ava was very calm this morning.  She was very patient with the many people that came into the prep room.  Thankfully, there were ‘no pokes’ (she very much dislikes IVs or blood draws).  

 

She chose Joe to go back to the Operating Room with her. She received a mask with bubblegum tasting gas and fell asleep with no resistance.

 
They made the first incision at 9:56 (Ohio is one hour ahead of Minnesota).  She is laying prone, belly-down right now.  One surgeon will harvest sural nerve from each leg.  It is done by a small incision and snip behind her knee and above her ankle. Then, an incision half way between to pull it out.  This sural nerve will serve like an empty tube for healthy attached-to-spinal-cord nerve to grow through.  Ava will lose feeling in the outer side of her feet, and the numb area should shrink over time. While one surgeon does this, the other is working near her shoulder blade, transferring half of her spinal accessory nerve to he suprascapular nerve.  This will help stabilize her shoulder and rebuild that area.  Ava will always have thinner muscles surrounding her shoulder blade area, making it appeared a bit winged. 

When they finish this, they will turn her over and we will receive an update.  

I will just update this same post throughout the day, as I receive more info.  Right now, we are feeling very peaceful with this decision, this surgery, this place.  

****update 12:00 Ohio time, 11:00 MN time

The harvest of the sural nerves as well as the nerve transfer from her spinal accessory nerve went as planned.   Her vitals have been holding steady.  Now, they are exploring her right brachial plexus and sorting through the scar material. 

****update 3:00 Ohio time, 2:00 MN time

We just received word from our nurse that the scarring was much worse than anticipated.  It took them about 2 extra hours to work through the neuroma but they eventually exposed workable nerve endings.  They are now exploring her left side and it’s 5 nerves, to nail down specific function before hopefully ‘stealing’ her C7. 

****update 5:00 Ohio time, 4:00 MN time

They feel they correctly identified C7 on her unaffected side, and have it grafted down to her lower plexus.  This is our hope of some hand function.  Had they not been 100% sure of their intraoperative testing, they would have left it….so this is a huge reason to praise the Lord.  Now, they are working on her C5 (the one of the 5 nerves that was not avulsed) to split it for other uses.  The huge waiting room here has seen many faces today, but it is nearly emptied out now.   We are calmly awaiting them to call our name to learn the details of the surgery and then go back to be with her. 

****UPDATE 6:00 Ohio time 5:00 MN time

We met with Dr. Schwentger and Dr. Yakuboff and they said, despite the extra length of the procedure, surgery was very successful.  Her C5 was indeed a healthy, good-sized nerve and they were able to aim for some additional function with it.  Both surgeons agreed on keeping her in the hospital at least two nights.  They also said that given the floppiness and low tone of Ava’s muscles in general, as well as the depth of her surgery, to keep her in a sling for the next 3 weeks except for clothing changes.  We feel as though, even though we certainly aren’t out of the woods, that a huge weight has been lifted from us, and we are so thankful for this day.  

County Fair complete, off to Cincinatti

There is certainly something to be said for keeping busy so worrisome thoughts are pushed back as best as possible.  Having the Nobles County Fair this past week was just the distraction we needed.  It was Vince’s first year as a real 4-Her;  Liv is still a Cloverbud.  If you aren’t familiar with 4-H, it is a program for kids 3rd grade-13th (!) in which you simply learn by doing.  Lots of community service as well as choosing other projects you want to learn more about.  

 

We almost gave up on Big White, but so glad we stuck with it and got her halter-trained.

 
Of course, Vince loves the dairy project most. Liv loved the social aspect of the fair.  I went on my first carnival ride in 15 years. Violet loved to play in the straw and is getting so close to walking!  Ava escaped with no more stitches and not even a cold.  So, we are off to Cincinatti Children’s for her brachial plexus surgery. 

 

Liv blow drying her goat. We just loved having them this summer.

 
Last night, we stayed at Ava’s favorite guest house — uncle Bill and Aunt Sue’s.  Lots of toys to play with and always the BEST hospitality.  So much love. We are all well rested and glad to have 4 hours of travel complete. 

  
This is the plan.  My parents are hanging out at our home with Vince and Liv.  The kids will be reliving my childhood by making pickles and freezing sweet corn. This makes me smile for sure.  We have about 9 hours of solid travel time.  We don’t have to be there until tomorrow afternoon.  Perhaps we will go to the zoo in the morning if things go well. 

The surgeons will reevaluate Ava and we will sign a bunch of papers.  We will talk about the plan, although things are done a bit ‘on the fly’ according to intra-operative testing.  We arrive Wednesday morning at 7:30, and they begin surgery at 9:00.  A nurse named Melissa that we have been in contact with often the past few months plans to come out to give us updates every few hours.  I will just keep updating a blog post throughout the day hopefully. 

Ava will stay overnight for sure Wednesday night as well as Thursday night.  Joe will stay with her, and Violet (not allowed not stay) and I will be at a close hotel. We will receive lots of instructions for care.  If she can tolerate pain, we will check out of hospital and spend 2 more nights in Cincinatti per their instructions.  Then, drive home. We chose to drive rather than fly as it gives us more flexibility.  

Our church will be open from 9-3 for people to drop in to pray on Wednesday.  Two veterinarians who are friends and prayer warriors are organizing prayer commitments by emails. Many many many people on Facebook have stepped up as well. It breaks my heart to think of us as such a family in need.  I really feel like we are going in the right direction and thankful we have access to medical care.  When I work with her arm that is completely flacid now and think that it is possible for her to have some shoulder function in 6 months, elbow function in 9 months and even some hand function in 2 years, it is just hard to fathom.  Our God will work a miracle if it is His will.   Trusting God will get us through this week.  

     

 

7 days

I wish I could say we are counting down the days to school starting or the days to some great vacation — but we are, of course, counting down the days until Ava undergoes her brachial plexus surgery at Cincinnati Children’s Hospital. 

We are confident we have picked the right team, but as the date approaches, we lie awake in bed thinking things over.  All the scars. All the areas that will be numb where they are taking nerve graft. 

Most of all, we try to focus on her coming out of anesthesia, with the function of her good hand still intact.  That is our biggest concern.  It is a risk doing these transfers but one we feel we must take.  

Pray that Ava stays safe at our fair this week. She fell twice walking yesterday.  There are just so many uneven surfaces and she has poor balance.  Pray that she stays healthy so she get cleared for surgery.  

Gotta run.  Dairy show starts in an hour.