Tuesday, September 27, 2011

Short and sweet

frowny face that looks like sophie when she was a baby

before the surgery with daddy

I will make this short and sweet.  Grace is fussing and needs cuddles.  Lots of docs are coming and going.  It's busy and we need rest.

A lot has been that way... short and... bittersweet actually.

The length of time the pediatric surgeons stay in your room to talk- short and sweet.  They are like the Navy SEALS that went into get Osama bin Ladin.  They are not the type of people you want to know or see often.  But they go in and get the job done and then they disappear into the night.  I was telling my parents, I think I've conversed and been in the presence of our surgeon for Grace for a cumulative 5 minutes max.  Other surgeons much longer.  He's like a spy or something.  Except he looks Father Time and sounds a bit like Gandalf and acts antsy like he's got to leave to relieve himself.  Surgeons are a unique folk here in the medical community.  I just tell myself that he is one tool in our arsenal and his purpose is necessary, though not warm and fuzzy, he did the job well and professionally.

Then you have the surgery.  And hell, I really don't remember how long it was to wait, which is odd because I looked at the clock a lot.  Maybe 2 hours.  We laughed and talked. And can you imagine all my ludite digital immigrant parents and in-laws sitting about our room, eerily empty without the crib and Grace, waiting and texting anxiously on their smartphones?  Yeah me neither.  A lot of big things happened yesterday.  Don't worry.  I got video just to prove I saw it... like sasquatch or a tax paying billionaire executive.  You just might not believe me if I didn't have proof.

Not so short and sweet?  Our night.  She was in a bit of pain off and on. She had an epidural put in to manage the nerve pain directly... which worked awesome until about 7pm last night to 11:30pm.  She was reacting to nerve spasms and jerking her sleeping self awake.  Ugh it was hard to watch.  I bugged the nurse quite often, though it is P.C. now to call that "advocating."  She'd go get the pain meds and well... that would take forever and I'd keep calling.  Though I know she was just trying to track down a doc to order the meds and getting the meds ready, my concern is for the grunting helpless baby, not the nurse.

Eventually they got the tylenol to help with the epidural... and it didn't.  Then I said, "MORE!"  So they got some morphine, a small amount, to help dull the pain so she could sleep.  Sleep she did.  Or is.  She is sleeping that is. The curtains drawn, the lights dim, quiet voices- ok no voices because that wakes her- and just docs and nurses coming and going.

The wait for the surgery also not so short and sweet... more hurry up and wait.  Your surgery is around 3... oh wait they are ready now at noon.  We'll pick you up in a half hour... oh wait in five minutes.  You'll wait here for the doctors for 15 minutes... or umm actually an hour and it will be hot and cramped too.  So we got in for surgery much earlier, which meh is good for those who are anxious to get it done.  I was anxious to keep my sweet girl around.  I admit some of the hold up before surgery was to make sure all the orders went through for the optional testing we consented to for neuroblastoma studies, because samples were not retroactive and the surgery time surprised us.  All clear though.

So, this post is not gonna be long and detailed about everything that's happened since we were admitted, since I'll hold her in a minute.  Here is the short and sweet:  Tumor removed.  Successfully.  Without complication with arteries or the vascular system.  The liver was much more diseased than expected, BUT this type of cancer has a high chance of spontaneous regression.  Not a game changer yet, remember- got to wait for those tests on the tumor.  She is healing, she can be held.  She was cleared for pedialite this morning, because she had a bowel movement which is good.  Kris is holding her.  Her vitals are all looking fantastic right now.  We are watching out for our own health, eating and sleeping as often as possible.  I'm pumping delicious mommy milk for Grace so when I have to supplement, it will just be au natural.  We are being super mellow and restful to keep her from waking and crying or fussing.

Her cries are agonizing to hear.  Some fussy.  Some pain.  Some just little helpless grunts.  For anyone but Kris and I, I know being beyond surgery is awesome and promising.  And yet...  Have you sat up hearing an infant grunt in her bed, not wanting to hold her because she'd wake up in pain and wanting to hold her to comfort her but needing to sleep for the both of you? And calling the nurse every time you thought she needed an extra push on her epidural, or have you clasped your hands together and did all you could do?  Pray to God to stop her cries and all her pain. My heart ached all night and still does.  This is much harder than labor. I felt powerful then.  Now I feel powerless and withdrawn.  Hopeful but cautious.

So no.  It's not over.  And that just plain sucks.  Today, we will hope for really good pain management and really good rest.  We will take each hour one at a time and each day one at a time.

All the good thoughts and prayers go a long way, and it feels like that climatic point at the end of The Grinch Who Stole Christmas when they whole town is singing. If feels greater than the pieces themselves and it's loud, like God will hear it better.  It's a song of love that is cathartic and tremendous as the vibrations sing through our little family.  Though I'm certain God doesn't have AT&T like me and already has great coverage and endless minutes, I know he hears all the calls and messages.  So thank you, whoever you are, for thinking of our family and sending love.

"Da who dorray, faw who forray, welcome healing, one and all... da who dorray, faw who forray welcome healing for the young and small..."


Anonymous said...

Hi Sophie, I'm encouraged about your little ones progress after surgery, I'll remember to keep her in my prayers. BTW, your blog is outstanding, I love all the details, thanks so much for sharing details. Cheryl Vidan(Traci Roger's Mom)

Faye said...


I'm so glad that Grace's surgery went well. Thank you for posting.

(another neuroblastoma mom)

Anonymous said...

Hi Kris and Sophie and Gracie.
Hope and pray everything goes well for you. God bless and take good care of that little sweetie
Richard Schuff - Gracies Great Grandpa's Brother?????

Anonymous said...

Hi, so much to deal with but thoughts and prayers coming from our family. Hope all turns out well for your little one. God Bless you all!
Melissa Kirchoff(daughter of Richard Schuff)