Free Fall — with a Ripcord

(from www.toddstocker.wordpress.com)

When Ray flew to Orlando on 12/3, I thought I would use the upcoming week to get Christmas “done”, so that we could just enjoy good family time the rest of the month.

I did end up doing a lot of (online) shopping while he was away, because I only slept in the bed two out of the five nights he was away.  Abbie would do OK during the day, but as night approached her oxygen needs would go up, up, up.  There were nights she was on six liters, and I was still working hard to keep her sats up.  Then, the sun would come up and life would calm down for a while.

The consensus was that she was suffering with a virus, and that I just needed to keep doing what I was doing:  multiple nebulizer medications, chest vest treatments, helping her cough, hydrating her, and giving her as much oxygen as she needed.

By Friday, 12/9, I was thoroughly exhausted, but it seemed that Abbie was on the mend.  She was needing less and less oxygen and looking better as well.  Ray was home, and Kyle arrived for Christmas!  The weekend was fairly calm, and we all looked forward to our family being complete with Chase’s arrival on Monday.

Kyle and I left to pick up some medication for Abbie around 11am on Monday.  About an hour earlier, I had noticed she seemed a little warm.  99.7…no big deal.  We picked Chase up at 12:30, and soon after Alicia called to say Abbie was needing 3 liters of oxygen, with a fever of 100.8.  I called the doctor, and left a message since they were at lunch.

My two big sons were starving, so we stopped for lunch.  As the check arrived, I got two calls back-to-back.  Dr. Lau’s office called to instruct me to take Abbie to the ER.  Alicia called to say that Abbie was needing 4 liters, with a temp of 101.2.  “She can’t wait much longer”, were the words I heard as we stood to leave the restaurant in a rush.

As we pulled up I remembered that the van was dead.  I directed Chase and Kyle to jump start it while I got Abbie ready to go.  I ran in the house to find Abbie literally gulping for air.  6 liters, 7, 8.5…nothing would bring her out of the mid-80s.  Our travel oxygen only goes to five liters.  I knew I had to make the dreaded call.

I called out the door “When the van starts, just move it out of the way…I am calling the ambulance!”

I HATE calling 9-1-1, but was so grateful when we heard the first sirens.  We had the oxygen concentrator pegged at 10 liters, and Abbie was still in severe distress.  The firefighters put her on 15 liters and that eventually took her up to 90.  We moved her quickly to the ambulance once EMS arrived, and it was another Moses ride through traffic.  Watching the sea of cars part is a little surreal.

Ray met us at the ER.  Abbie was not doing well.  The word “intubation” was floating around, as she was struggling so immensely.  They gave her a nebulizer of epinephrine, which helped.  After a second one, she was moved up to the PICU.

I was numb from shock.  “Free fall” were the only words that came to mind.  It had all unraveled so terrifyingly fast.  Ray and I were forced to confront the “what if” questions, and think about decisions we would make if Abbie did not respond to treatment.  Out of body.  Or, perhaps, I wish it were…I wish I didn’t have to be in the body whose ears heard the questions, whose lips gave answers, whose head nodded in agreement, who heart shattered with the understanding that one day I may have to let my daughter go.

Finally, my family was all on the same island, and yet, not together.  This was a stomp on the pieces of my heart already scattered on the floor.  It was a very difficult day.

Abbie got progressively better through the week, and was discharged Saturday morning.  While it is wonderful to be home, caring for a newly discharged, medically fragile child remains difficult.  This is now the third week of little sleep, and I am really feeling it.

We finally decorated our tree on Sunday, because we always wait to have everyone there to do it.  The stockings are hung.  And that is all.  I love Christmas, and Christmas decorating, but it is not feasible this year.  Another poke at a tender heart.

The boys have been wonderful.  Helpful, funny, understanding, loving to their sister.  I am so grateful that Abbie hopefully got her sickness out of the way before Christmas.

And, through all this, I am profoundly grateful, that even during a frightening free fall, the rip cord of faith sustains us.  Wonderful friends surround and encourage us.  Family supports us.  God’s word stabilizes even in the most violent of storms.  We are truly, truly blessed.

P.S.  – A funny, little (non) coincidence.  I googled “free fall” looking for an image for this post.  I chose the photo above, and then was curious about the back story.  It was posted on the blog of a pastor, who lost his eldest daughter in a traffic accident in 2009.  This was not the lead element of his blog, but I found my way to Makenzie’s story, and smiled brokenly at the too-familiar reactions he described as he and his wife realized their daughter was gone.  If you have a moment..visit www.toddstocker.wordpress.com

 

Horse Cents

We had just finished up another wonderful ride on Lizzy yesterday (who is not the horse in the photo), when Patty, Abbie’s riding buddy mentioned that the riding center, a non-profit organization, had raised $43 on Good Search.

I was completely unfamiliar with what Patty was talking about, so she explained that every time I did an internet search through www.goodsearch.com, Manawalea Riding Center would get a penny, if I designated them as my cause.  Hmmm…goodness knows I do a lot of searches.

But, it got better when Patty told me about the retail partners who contribute a percentage if you access their sites through GoodSearch.  I looked at the homepage today, and there was J. Crew, Home Depot, and Levi’s among others.  Patty also mentioned that Amazon give 5% of the purchase to your cause.

During this shopping season, will you help me support the incredible people (and horses) at Manawalea Riding Center?  The work they do with such love touches people like Abbie in places and ways that nothing else can.

Just go to www.goodsearch.com and enter “Manawalea Riding Center” as your cause.

A big “Mahalo” and “neighhhhh” for your help!

 

 

Oh, by the way….

We’ve been walking this path for so long now, that I have found it easier on my heart to no longer focus on the “BIG” things….talking, walking, eating, etc., and put my energy and attention into how to make each day the best it can be, affirming Abbie for all the little steps she continues to take.

Sometimes, though, big things can sneak right up and lovingly smack you in the face.

A couple of days ago, I was on the way out the door to a meeting when Alicia said, “Oh, by the way, earlier today used the things the vision teacher left with us to test Abbie’s vision”

A couple of weeks ago Abbie blissfully slept through a visit from Auntie Amy, her extraordinary vision specialist from the school system.  Amy wanted to test Abbie’s visual fields, particularly the lower ones, since Abbie will be driving soon.  Most people find it convenient to be able to see potential collisions before they happen, but I didn’t think Abbie’s lower fields of vision were very good at all.  She rarely looks down, so we present all her schoolwork right in front of her.

It always takes great ingenuity to devise ways to test Abbie.  Amy is brilliant in this area!  She brought a wooden wand, onto one end of which she had put velcro.  She then attached velcro to three different colored balls.  She also brought a small black board with the three blocks the same colors as the balls — this would be Abbie’s answer board.

Since Abbie refused to open her peepers for Amy, we were instructed in how to practice with and test Abbie.  Alicia had done just what Amy had advised.  I bit my lip and asked, “Can she anything below the horizon line?”   Part of me really didn’t want to hear the answer, I will admit.  Ignorance is often my most comforting friend.

Then Alicia laughed at my apparently-stupid question.

“Let me tell you what she can see….I was putting the balls down by her feet and she was getting them right.  I even tried to trick her a couple of times by not changing the color when I said I was, and she still got it right.  If she couldn’t find the ball just by looking down with her eyes, she lifted her head and looked down.”

She lifted her head and looked down.

Those words rang in my ears as I dropped my bags and ran to Abbie at the massage table.  I just hugged her and cried.  Those words…may not sound like much to able-bodied people, but this is something we have been working seven years to get. Seven years, and then “oh, by the way” it just happened.


I had just finished writing this update, and went to take  pictures to go with it.  Abbie was working on this very task, so it was perfect timing.  I got to see for myself, and record for you all, where Alicia was placing the balls.  Way, way down by Abbie’s perfectly pedicured piggies.

Abbie chose the color blue from her answer board as soon as we gave her the chance.  So, Auntie Alicia decided to get a little bit tricky:

Here she is, out of Abbie’s view, putting the red ball on the wand.  She then placed it down at her feet, where the blue ball had been previously placed.  To ensure that Abbie isn’t just making lucky guesses about what color of ball is on the wand, we gave her the following choice board after showing her the red ball:

Abbie stayed perfectly still in her chair, even when we prodded her to make a choice and tell us what color of ball was on the wand.  We asked her several times, and she never even twitched. The right answer wasn’t there, but she wasn’t going to make us stop bugging her by making an incorrect selection.  She knows exactly what she is doing!

Every day, it seems, she is showing her renewing strength.  I remain truly in awe of her.