Saturday, July 7, 2012

The Good. The Bad. The Incredible.

It's time to talk about that Cranial Vault Reconstruction.  I purposely didn't blog immediately following the surgery because I was afraid about what I would write.  And everything seems worse "in the moment."  Plus, I have had a summer cold, which has made my few "both kids are in bed" moments look like this: Scream around the house, do the dishes, dash into bed.  You understand.

I also want to let you know that there are some pictures in this post that some people might find uncomfortable.  I didn't put them on facebook because I didn't think anyone wanted them showing up on their News Feed all of the sudden.  But since you clicked on this blog, and since you will have to scroll down to see them, I am putting the responsibility on you to know what you do and don't want to see. Um-k.

The Good.
There is so much good to share.  So much to be thankful for that it is hard to know where to start.  We had fantastic medical care at Children's Hospital.  Everyone was a united team, rallying for Tucker's best.  We believed he was in good hands-- great hands-- his entire stay.  Two touching memories and then some pics from pre-op:

Memory One: We got stalled in pre-op for almost two extra hours.  Since we brought Tucker in fasting, he was very hungry when the nurse finally came to get him.  We were all a little exhausted, and hungry, and tired of the small little cubicle we were bouncing around in.  Well, finally the nurse came to get Tucker.  She was so sweet.  She gave us lots of time for kisses and hugs-- such a sweet memory in my mind-- and when she went to put him on the bed he started crying.  So, that woman just scooped him up in her arms, draped the blanket we brought around him, and offered to carry him into surgery.  I was so thankful to send him off like that.  The doctors and nurses all told us he was all smiles when he was brought back into the Operation Room.  We sat in the little cubicle and gathered ourselves and prayed to ourselves and then went to the lobby to wait with our parents, and our sweet bestie Suz who had brought us Jimmy Johns (she was freaky fast with her delivery, too).

Memory Two: Our night nurse on the 5th floor, Leliana.  I probably spelled that wrong.  If anyone personally knows Leliana I hope you will point her to this blog so she knows what a great nurse and women she is.  There is something touching about watching another woman care for your child, knowing she can do what you can't.  No one did this with more grace and skill and compassion than Leliana.  She was patient, soft-spoken, knowledgeable... wonderful.  The last two nights I sent (practically begged) Dave home to sleep, so it was just Leliana and me.  One night Tucker was up, and uncomfortable, and spiking a fever.  She took care of all his meds-- then offered that maybe he could sleep in the hospital bed instead of on my chest-- perhaps this would lower the fever (body heat) and give me a chance to rest myself.  So we carefully laid his sweet head on his pillow, elevated the bed and laid our cheeks down on the bed at his head level-- one on each side.  We talked softly to him and patted his tummy and when he was just drifting off to sleep we chatted with each other a little.  She laughed at our birth story, got me to talking about sweet Dekker, asked about my life outside the home.  It occurred to me later that Tucker was asleep most of that conversation and she had become my middle of the night caregiver instead.  She was a ray of light during some bleak nights and I am so thankful for her job ministry to me.  I slept as well as I could knowing she was monitoring Tucker, too.  (This memory is making me cry.)

The Bad.
After much mental debate, I have decided to not offer too much commentary on "the bad."  Frankly, I hope I remember the Good and the Incredible and never remember and quickly forget the bad.  I will just say this-- our first night in the PICU was the longest night of my life, and I am not kidding when I say that I might need to see sweet Dena the therapist again before I can fully move on.  It triggered every awful thing I can think of, and seeing Tucker in such pain, and being able to do literally nothing about it, was nothing short of traumatizing.  Seeing his lines and monitors was nothing compared to hearing him scream, watching him thrash about-- I almost dropped him once when I was holding him, watching his heart rate race into the 260's, a midnight blood poke, a 3AM blood transfusion-- it was scary and terrible, terrible, terrible.  But it's over.  And, luckily to me, that is the only time I have experienced that, and I knew it would eventually get better.  The PICU at Children's is a sad place, and we were reminded that our situation could get much worse as we watched a family two doors down prepare to say Good-Bye.  Upsetting in its own right, it was also perspective giving.

The Incredible.
We were totally humbled, and amazed to feel the power of prayer during the surgery and during our stay.  We couldn't keep up with texts and updated facebook instead, which landed nearly 100 "likes" at one point.  To know so many people were thinking about us and praying for us made a huge difference.  We felt uplifted and encouraged, even during the roughest times.  We had a few visitors, who came with a serving heart and full of encouragement.  They brought us Starbucks and dinners and lunches and thoughtful gifts and my bestie Beth even gave me the jacket off her back.  David's parents juggled loving on Dekker with encouraging us, and even rearranged one night to bring Dekker to the hospital so we could see him for awhile.  My parents exhausted themselves taking care of us, and getting in a couple days of work so they could take Dekker the next week.  They drove the 250 mile round trip between their house and ours countless times.  Please know that your prayers were noticed, every encouragement counted, your support was our nourishment.  Thank you.  And in the best way possible, I hope we never experience it again.  (Or that we never need to, anyway.)

We also think that the medical science behind this surgery is Incredible.  It is hard to think that his scalp was cut back, his skull cut open right down the middle, his skull removed, reshaped, and then put back in.  On a Wednesday.  And we went home Saturday.  What?!?  One surgeon said that when they cut the suture down his skull that it had a sort of "pop".  This is an indicator that his head had been under pressure.  Poor baby.  Seriously.  The surgeon said this pressure can lead to excessive fussiness, and several other "Cranio Families" have told us that their kids had a spike in developmental milestones after the surgery.  So far, we have found that when Tucker is awake, has good pain control, and isn't tired, that he is a little different.  Maybe it's just in my head, but I feel like he's sitting independently more, closer to crawling, talking more-- and just in general a bit more pleasant.  I don't know.  I suppose we will see over time. 

Here are a few pics of his scar, etc. The scar and his swelling is looking much better.  When we see it, we are reminded that we serve an Incredible God.

 Our recovery at home has been here and there.  We have good moments and tough moments.  We expected that, though, for the most part.  (Though it seems cruel that we got sick right now!)  Our friends are bringing us meals and every time they leave our fridge is full and our heart is overflowing.  If you want to keep praying for our recovery, we would appreciate it.  We look forward to the day when he is off all his pain meds (which might be causing an upset tummy) and acting like Tucker again.  We see glimpses of that now, and we know it was worth it, and that within just a few weeks this will feel more like a memory than a reality. 

In the mean time, this sweet boy is still winning us over with his smiles.  He has "discovered" the dog for what feels like the first time and is about to get whip-lash every time he sees her.  He is talking more-- the sweetest sound to any Mom's ears.  He is sitting totally by himself, feeding himself his bottle, and only waking at night once (for a bottle and pain meds and then back down).  He is getting back to a nap schedule, loves his big brother, his soccer ball, and fresh air. 

Here's to more of all things wonderful.

On the journey,
And almost to the other side.