Friday, November 30, 2012

Plenty to be Grateful For!

On November 6th while the rest of the world was glued to their TVs and radios anticipating the presidential election results, I was an absolute mess for reasons of my own.  Brynne was scheduled for surgery on her eyelids that Tuesday at 10am.  People with mitochondrial diseases very commonly loose the muscle in their eyelids causing severe drooping.  In just the last 6 months it seemed like Brynnes eyes had gotten drastically worse.  They went from just making her look a little sleepy, to actually impeding her vision, but just arriving at the decision to move forward with the surgery had been a bit of an ordeal.  Our geneticist Dr Mann who is Brynnes primary doctor was really concerned about whether or not the surgeon knew enough about Brynnes illness to handle any emergencies that could arise during surgery.  He also wasn't sure if the surgeon was going to do the best type of surgery for the ptosis understanding that this would likely be the first of many surgeries for her droopy lids.  Then there was the concern of anesthesia.  Mito patients can have severe adverse reactions to some of the common types of drugs used.  If the anesthesiologist wasn't familiar with her condition as well, there could be serious problems.  They told us that because of her condition, what would normally be a simple out patient procedure for anyone else, Brynne was 5 times more likely to have complications and her recovery would be 5 times longer.  Dr Mann spoke at length with the surgeon who spoke at length with the anesthesiologist and was finally confident that we were in good hands and could move forward.  It was determined that Brynne would be admitted to Valley Childrens 18 hours prior to surgery so that she could be monitored and have an IV to be sure she was hydrated before going in.  Post surgery she would be taken to the PICU where she would be closely monitored for the next 24 hours before returning home.
It was a good plan, but as so often happens, nothing really went according to plan.  In fact it was a bit of a disaster.  Brynne started off Monday morning at school.  It was red ribbon week and she hated the idea of missing any of the fun dress up days.  She made it til noon in her own idea of a hawaiian outfit, before we had our pre op meeting at the surgeons office.  They let us know that the anesthesiologist would be admitting Brynne to the hospital and we needed to be there by 2pm.  By the time we left the pre op appointment, Brynne wanted nothing to do with it.  Her enthusiasm about finally getting her eyes fixed so people would stop asking if she was tired was replaced by an iron will dead set against surgery.  She had all sorts of excuses but I could clearly see she was getting nervous.  I was grateful I could see it for what it really was because it made my heart soften towards her rather than feel like wringing her neck for the screaming, stomping and very loud refusal to go to the hospital.  I wasn't sure how I would even get her in there on my own while carrying her little overnight bag because of the fit she was throwing.  When the time came to go in, the screaming and stomping were reduced to whimpering and big crocodile tears, but the fight was gone.  She just begged me not to make her do it.
After two hours we were finally admitted into our room but the nurses couldn't reach the doctor who was supposed to admit Brynne and therefore had no admitting orders.  The surgeon, when we finally reached him, insisted that the anesthesiologist was supposed to admit her.  The anesthesiologist wasn't even working that day and when he was finally reached several hours later, had no idea that he would be caring for Brynne until post op!  In the mean time the surgeon stopped answering his phone.  We ended up going around and around until nearly 10 pm when Dr Mann, from his vacation in Hawaii made several phone calls educating a handful of doctors and nurses on Brynnes condition and needs before we were eventually admitted but were left still crossing our fingers that who ever was actually doing the anesthesia for the surgery in the morning would get to work in time to read the two articles Dr  Mann had provided regarding mito patients and anesthesia.

It was emotionally draining to say the least!     Luckily my sweet friend Haley had brought her daughter who is Brynnes very closest friend to the hospital with a HUGE basket of goodies!
  Clara kept Brynne distracted and Haley helped calm my nerves.  It also gave me a break from reading about the Winks Fairies to Brynne. My voice was hoarse!  They left just as Brynne was finally about to start her IV.  She was asleep curled up next to Jeff within minutes.  Shortly thereafter Jeff headed home to sleep and I did my best to get some rest on the fold out chair/bed next to my girl.
The next morning Jeff came back in time for me to race home and shower before getting back just in time to meet the anesthesiologist.  We had agreed that if either of us weren't 100% comfortable with him that we would be postponing the surgery all together, regardless of the ordeal we had already been through to get there.  Luckily the doctor had gotten there in time to read up and do his homework.  He met with us for 20 minutes and explained in great detail what his plan was, what his back up plan was and all of the things he had taken in to consideration in making those plans.  We left that meeting feeling peaceful and grateful that our prayers had been heard.  Just a few minutes later Brynne was being wheeled away and in to surgery.  I'd be lying if I tried to tell you that I wasn't in tears.  I was just lucky that I was able to hold back the sobs that I could feel in my throat.

When the surgeon came out after the procedure was finished I think I finally relaxed for the first time in at least 36 hours.  It couldn't have gone any better.  The muscle and tissue in her lids had no deterioration as we had kind of expected.  It was just a matter of muscle strength.  I need to look into getting an occupational therapist who can give us some exercises to do with her to build those muscles so that she can keep those lids up for as long as possible.
My mom had arrived just after Brynne had gone in for surgery, and Nan arrived shortly after it was finished.  I can't tell you how much I appreciated having both of them there with us as we waited for Brynne to wake up.  I received so many encouraging emails, texts, calls, and messages on Facebook with well wishes for Brynne.  Each one of them meant so much to me and I felt the love from all of our good friends and those who love my girl.  Even the new secretary at the elementary school called me twice while we were there just wanting to check in on how our girl was doing.  These things are what helped keep my spirits up as I sat glued to Brynnes side looking down at her swollen bandaged eyes.
She was pretty miserable and the pain medication they could give her was one that only lasted for a short 15-20 minutes before it wore off and another dose was required.  The books that I had let her choose before coming in kept her distracted and she did tease with Nan a little bit, but she just wasn't herself.  My loud opinionated girl was quiet and when I gave her any options for books or food or anything else, she just quietly answered, "I don't know, eider one is fine..."
She was like this when Clara and Haley came back to see her that evening.  Clara wasn't sure what to make of it, but was such a sweet friend and tried to just love on Brynne anyway.  The flowers and balloons she brought in lit up Brynnes eyes for a bit.  Mine just teared.
I was in tears again as Brynne heard that my dad was there to see her.  She had been anticipating his visit.  One of the bandages had shifted and there was a lot of swelling and it was causing her a lot of pain.  She was begging to have it removed.  We ended up getting the go ahead from the doctor but he told us how much it would hurt to take it off and recommended that we do it a little at a time rather that turning it over to one of the nurses  for a quick ripping off.  Brynne decided she just wanted to wait til grandpa got there.  She knew he would take the best care of her.  In the end it was Brynne who slowly and steadily took her bandages off.
We had a few visitors from our ward who happened to be working at the hospital that night who came by to see the little patient, but by 9pm it was once again just me and Brynne.  It was a long night.  Each time Brynne cried out in pain I'd climb out of the  makeshift bed I was trying to sleep in and climbed into Brynnes.  As long as she could reach out and squeeze my arm she was okay.  I was sound asleep curled up around her when all the doctors came filing through in the morning.  I felt kind of sheepish with my jeans, bed hair, and morning breath as I tried to answer their questions and take directions on what we were to do with her next.
Several of the nurses and staff  commented on how they never discharge anyone from the PICU and it was a big deal sending Brynne home.  She rode out in a little red wagon laying down grasping her flowers from Clara, excited to be going home, but still really out of it.  As we left I thought about the family that I'd overheard in the waiting room calling their friends and family telling them to hurry and come to the hospital to say goodbye to the 10 year old girl that they loved.  She had sustained too much brain damage in the car accident she was in and she wasn't going to make it.
I thought about how the severity of Brynnes illness had become so much more apparent to me just since this school year had started.  About how her vision is getting worse, and her hearing isn't so good. How the difference in her size compared to her classmates seemed to be growing.  I thought about that little nudge from the spirit that had come with such clarity letting me know that this was the healthiest Brynne would ever be, right now.  Sometimes it feels like too much. Too heavy a burden to carry to know, that more likely than not I will watch my baby struggle to keep her body functioning and likely outlive her by many years.  But that day, walking out of the PICU, I recognized that I still had it pretty good.  My daughter was coming home with me.
When we got home Brynne had cards and a few gifts that friends had brought by.  More friends stopped by or called to check in.  Brynne couldn't get over it.  She said to me, "Mom can you believe all of these people are calling and coming over just for me? Who else do you think will come?"  She felt so loved!! And I love those who made that effort even more for helping her feel that way.

Within a few hours of being home, Brynne convinced my dad she was up for a bike ride to the park and a ride on the swings.  The next day she convinced me she was up for going to school.  It was neon day and she just couldn't miss that!  Her doctor said all of these things should be fine, but I still stood out in the middle of the playground at the school and watched her so carefully until it was time to line up and then followed her all the way to class.  She was ready to resume life as she knew it, but with the intense emotions, the lack of sleep, and the gratitude I was feeling, I was just having a hard time letting go.
It's been a few weeks and most of her stitches are out.  There is an inner layer that are still there and will be until she is 6-8 weeks post surgery.  Until then there will still be a bit of swelling and it will be hard to know just how much lift the procedure has given her.  It won't be as much as it could be had she gotten the typical lid lift, but that leaves too much scar tissue and makes it nearly impossible for future surgeries of a like kind. What comes next for this little one remains to be seen, but for now she is enjoying seeing a little better, and we are just grateful.  Grateful for the doctors and nurses that took such good care of her. Grateful that everything went so smoothly. Grateful that her recovery was faster than anyone anticipated.  And especially grateful for those who took the time to show their love and support to make our girl feel so special.  Thank you just isn't enough!

Wednesday, November 28, 2012

Ready or Not, Here it Comes!

Like a bunch of cheery little elves, I had 5 extra sets of hands helping assemble decorations and putting lights into place on Monday. We worked for hours and at the request of two of my much younger helpers we did it all rocking out to 80's tunes!! The good news is, I've NEVER gotten so much done in one day. The bad news is that I still have all of the bushes to cover, the other half of the roof to finish and then I need to connect all of the extension cords, plugs and timers so that all of these lights actually have power. The really bad news is that rain is expected with the next hour and a half and it's expected to continue through the weekend! Ready or not, the rain and the deadline rolling at me much faster than I would like!!

Monday, November 26, 2012

Ready, Set, Go!!!!

 Thanksgiving was just four short days ago. Fresno temps have been hovering near 70 degrees.  The leaves on the trees are just barely beginning to fall.  My front door still looks like fall.  Which it technically still is, I might add.
 The problem is that I live in a neighborhood full of over achievers.  Think Christmas with the Kranks.   And no pressure or anything but beginning this weekend, the entire neighborhood will be a bumper to bumper traffic jam full of people coming to see all of our lights.  All of my neighbors are ready for this. I am not.
I usually go get the boxes of decorations at the end of October and begin wrapping the trees.  It usually takes about a month of working to get everything done.  I just picked up these boxes today.  Filled an entire truck bed, and still left a bunch of it in storage.  
It's time for the madness to begin.  My fingers will be raw by the weeks end and I will be bruised and scraped, but my house will be well lit. I will definitely need this bag of chocolate Tiffany just dropped off!  Even the queen of procrastination can't put this off any longer. Ready, set, go!!!!!!!

Tuesday, November 20, 2012

Goal!

Brynnes Mitochondrial Disease effects just about every aspect of her life in big and small ways.  During the summer and other hot months in Clovis one of our main concerns is helping her to regulate her body temperature.  Brynne doesn't sweat and can easily overheat. This can lead to passing out,  a coma, or much worse.   One of the most noticeable things to others is her size.  She is considerably smaller than all of her classmates.  She doesn't have the energy or strength of other children either.  So when she begged me to sign her up for soccer this year I tried to just blow it off and hope she'd forget about it. Anyone who knows Brynne knows exactly how that worked out for me.  After talking to a friend who is on the board for the league and a lengthy conversation with her coach, we agreed to at least give it a try and just see how it would work out.  The rest of the team had been practicing together for about 2 weeks by the time we had all of the details worked out.   On our way to her first practice she was determined to do this, but I could tell she was a little anxious about it all.  
 Before we arrived at practice, the coach had taken a few minutes to explain a little bit about Brynne's condition to her team mates and the parents who were there.  They were going to have to make a few concessions for her during games regarding subs depending on Brynnes energy levels and they wanted everyone to understand why.  
 Brynne was placed on the "C" team which consisted completely of girls who were at least a year younger than her.  They couldn't have been a sweeter bunch of girls.  They were supportive and encouraging to Brynne from the very first practice and all of them were constantly asking her if she needed a spray from their mist blowing water bottles.  Brynne recognized from that first practice that, "all of the other girls were much better than me, but it's okay because I'm just learning".  Every practice she gave it her all and came home exhausted in a good way.  And she was learning.
After a few games she finally understood the game and the positions. She wasn't afraid to get into the thick of things if she ever got the opportunity.

She ran back and forth across that field as long as she possibly could.  She could signal the coaches to let them know when she was needing a break at any time and they would promptly send in a sub.
Brynne never complained or seemed concerned that she was playing with girls who are so much bigger than her, but I have to admit it made me pretty nervous.  One game she was knocked down flat by a girl on the opposing team.  Two of her teammates were there in an instant sweeping Brynne back onto her feet and dusting her off.  One of them even patted Brynne on her head before racing off to get back to her position.  I realized those girls had her back and I could relax a little.
The coaches were so patient with Brynne, teaching her the basics and giving her tons of playing time in spite of the fact that she was far from the star of the team.  One of the coaches found a special cooling towel that was really helpful in keeping Brynne's temperature down on hot days.  I know because he bought one for her, and everyone else on the team!  She would sometimes get to start the game off with the first kick and loved having the chance to throw the ball back in when it went out of bounds.
But the best part of watching Brynne play soccer was the grin she was always wearing whenever she was on the field.  She loved the game!

Like the rest of the girls on her team, running through the victory tunnel at the end of each game was always  something much anticipated
 But even better than that was having family and friends to come watch her play.  
 She would talk about it all week wondering who would be able to come see her play this Saturday.  
 She was so thrilled when Ashlyn came to visit in October and came to watch.
And again when Kristin came for a visit in November.
 But the very best game of the season was the last.  Brynne's coaches gave us a heads up and then talked to her at the beginning of the the 4th quarter and explained to her that she was going to be the one to start the quarter with the first kick.  Then they explained that they wanted her to just keep kicking it all the way to the goal.
 "Wait so exactly what position am I then? A forward?"  They told her not to worry about it but just to drive that ball all the way to the goal and then to take a shot. 
 When the whistle blew Brynne gave that ball her biggest and strongest kick
And then she gave it another
 Three kicks down the field and then she kicked it right in!
 Her teammates screamed and squealed
 Hugs and high fives were all over the place
Even from the girls on the opposing team.  And can you see that smile on my baby girls face? She was beaming, and my vision was blurred by my tears of gratitude.
 I had just been a witness to the general goodness of the people in our community.  The coaches and players of both teams had made special arrangements to give Brynne that opportunity to score a goal at the last game of the season.  Brynne isn't quite fast enough or strong enough for that opportunity to be one she would have had on her own.  A good game for Brynne was one where her foot made contact with the ball at least once, but not for lack of trying.
The girls on Brynnes team felt so great about giving 
Brynne that moment.  The girls on the opposing team were even happy about what they had done for the little girl on the other team.  It is one of the best feelings in the world to know that you have made a difference for someone else. Given them service, an act of kindness, or an opportunity.  I love being on the giving end and do it as often as I can, but the feeling of being on the receiving end that day was overwhelming.  My heart was so full as I walked up to shake the hand of the other teams coach.  My throat was choked with emotion and I was lucky to be able to convey my humble thanks.
But the real credit belongs to these three guys.  These coaches get it. They get the big picture.  Yes the kids need to work hard. Yes it feels great to win, and yes it's hard not to be overly competitive in this school district that we live in.  But really what matters are the kids. They are playing team sports to learn and to grow.  To have positive team experiences.  To build relationships with their peers.  To build confidence by realizing that they can do things that they didn't know they could do.  These coaches took it one step further and helped a little girl, my little girl, do something she would probably never have the chance to do again.  And in doing so, they taught the girls on their team that being good people, generous and kind people, feels even better than winning.  What a goal!