Tuesday, May 24, 2016

Musings from the Surgical Waiting Room

The hospital surgical waiting room is an interesting place.  It's the place where parents go to sit, wait, worry, pace, and cry as their children are being operated on.  This is my 18th time doing this.  I've been in three different waiting rooms at three different hospitals, but they are all basically the same.

We are all together in the same room, waiting for our child to go to recovery.  The surgery could be something as simple as ear tubes, something quick but worrisome like a biopsy, or something very serious like a brain tumor.  But no matter what the reason people have come into the waiting room, we are all concerned about our children on that operating table.  In that, we are all the same.

As I look around right now, I notice the furrowed brow of the mom trying to hold it together as she worries about her child.  I hear the laughter of the large group in the corner who have gathered to distract the family and try to keep their minds off of things.  I observe the young Jewish father wearing his Tallit and softly praying.  I listen to the nervous chatter of the parents as they count down the minutes until they can see their children.

Some of the parents in here are veterans, like me.  I can tell because they are armed with the essentials:  snacks, drinks, and items to distract.  They plant themselves near an electrical outlet to charge their phones, and they don't walk out of the room for even a second so that they won't miss an update.  They pack lightly and efficiently, knowing that they will have to carry around whatever they bring.  Their experience is also evident in their eyes, and I smile gently to acknowledge their strength and bravery.

Others are blessed to have never dealt with this type of waiting before.  They are first-timers, and their tears and wringing hands give them away.  They have large bags filled with items to keep them busy, but they rarely look at any of them.  Instead, they repeatedly glance at the O.R. board for information about their child.  They look around for snack machines and realize there aren't any, so they must make the 10 minute walk to the cafeteria to get food.  I smile at them in understanding, because I've been there.  It's not that we veterans don't worry.  Oh, we do!  It's just that we know that worrying won't change anything and we know it's better to just try to distract ourselves.

This is why my husband and I have a system.  We both bring our electronics with headphones and either watch mindless shows on Netflix or play silly games on our phones. We rarely talk to each other and prefer to just tune out the noise.  I text updates to family members as we get them, but we otherwise just try to escape.  It may seem strange, but it works for us.

But we have also learned not to judge how others cope.  Those who may seem carefree and jovial may just be dealing with the situation in the best way they know how.  Others who wail and sob loudly for the several hours they are in there are just expressing their concern for their loved ones.  We don't judge--we just put our headphones in and turn up the volume!

I wish I could say that #18 will be the last time I enter this waiting room, but it won't be.  I envy those who will walk out of the hospital with their child later today, because my daughter will be admitted for over a week.  But I choose joy, because that little girl on the operating table right now is the bravest girl I know.  And she is worth 30 more visits to the surgical waiting room.

Not in pre-op yet

Surgery won't be for a few more hours.  An orderly took us down, only to realize that he got the wrong patient. Dr. Campbell's surgery (on a veptr kid) is taking longer than they thought.  Please pray for that family and that the complications aren't major.  Veptr families have a special bond!

Abby is quite happy to continue playing in the playroom!  I'll send an update when we are in pre-op.

Monday, May 23, 2016


Today's picc line placement went off without a hitch, and we spent the rest of the afternoon and evening in the playroom, visiting the atrium, and playing Uno.

  Reality set in tonight before bed and Abby shed a few tears, but she is ok.  We talked about how bravery doesn't mean she isn't scared.  Here's hoping she sleeps through the night before the big day tomorrow! 

She has loved the purple preview pictures that were posted today!  I know she will be thrilled to see everyone's #purpleforabby pictures as she recovers.

Thanks for all of the prayers and encouragement!  We feel so loved and know that God will be right there with us, just as He has every step of the way!

Saturday, May 21, 2016

Get Your Purple Ready!

We've got our purple picked out!!  How about you??  Are you ready to go #purpleforabby on Tuesday??
For those of you who are newer around here, every surgery day lots of our family, friends, and even people we don't know personally wear purple in support for Abby and take selfies to post on Facebook.  Purple is her favorite color, and she absolutely LOVES seeing pictures of people dressed up in purple to show their love to her.  Her favorites are the animals wearing purple!  Those often bring the first smiles we see post-op!  We will seriously look at all of the pictures multiple times while in the hospital.  The more creative, the better!  They seriously bring her SO much joy, which is what it's all about when you go through what she has to endure.
If you post a selfie, be sure to hashtag it #purpleforabby so that it is easy for us to find it later.  That way, all I have to do is search that hashtag and all of the pictures come up.  If anyone asks you what the purple is about, feel free to share about our brave girl's journey, or send them to the blog. Thanks everyone!

Friday, May 20, 2016

Tiny Dancer

My tiny dancer and her cousin Lucy had their "dance recital" on Mother's Day!  Since Abby will be in the hospital for her studio's dance recital, we let them put on their own little show for us.  I can't post videos to Blogger for whatever reason, but the dance video is on my Facebook page.  Here are some pictures of the cuties!  

Wednesday, May 18, 2016

It's Coming, Whether We Like it or Not

I've kind of been in denial about this next surgery, and I'm not sure why. I know she needs it and for the most part, I know what to expect.  But I've been putting off pretty much anything related to surgery.  If I ignore it, it will go away, right?

Wrong.  Which is why I resignedly began packing yesterday.  You may think that is early, considering we don't leave until Saturday, but a lot is involved whenever we go anywhere.  I have to update and print multiple copes of her health history, gather medical equipment and supplies, hunt down specific clothing that she is able to put on easily post-op, collect toys and activities for her to do, get Caleb packed and organized...so there's a lot.  Plus, we are pretty busy the next few days and yesterday was when I had the time to get a good start on it.

To quickly summarize this surgery:
*  We leave Saturday and will attend a Thoracic Insufficiency Syndrome family day on Sunday.
*  She will get her PICC line placed on Monday morning and will then be admitted.
*  Surgery will be first thing Tuesday morning (probably 8 a.m.)
*  They will be putting in two long rods this time that will be attached from the top of her ribs to her pelvis.  This will stabilize the hump (kyphosis) that has gotten progressively worse.
*  We don't know exactly how long she will stay.  Her last insertions were both 8 days, but she only had one side done at a time.  This will be the first time she will have both sides done.  (That is tentative of course--there's a lot we won't know until Dr. C. gets in there.)
*  After we get home, we expect it to be about a month before she is fairly functional, and another month before she is back to her baseline.  This is again based on how she has done in the past.
*  We will start back up with intensive PT as soon as we get back home.  We love her new therapy center and have been really impressed with what she has done so far.  She's doing PT and speech there and loves it!

What to pray for over the next few days:
*  Abby has a lot of anxiety about this surgery.  This one is really getting to her as she is becoming more aware.  It's impossible to explain to a 5 year old who isn't "sick" why she has to go through all of this. 
*  I threw my back out last Thursday and have been in pretty intense pain since then.  I am going to the chiropractor, using ice, and taking heavy duty Motrin, but the pain is still not under control.  Sleeping on a hospital couch isn't going to help things much.
*  Caleb internalizes things his own way and struggles with anxiety in general.  We are trying to reassure him and give him opportunities to ask questions.  He's staying with my family and they are awesome about keeping him busy, but it is still hard on him when we aren't there. If you see him while we are gone, give him a hug!

Thank you, prayer warriors!

Wednesday, May 11, 2016