Patient Interview

How are you feeling tonight Gabe?

Good

Why are you in the hospital?
They're making me itchy

Why are you here mom?

I'm taking care of you Gabe.

Well, I have Jenny (current nurse)

Who else is taking care of you?

Grandma

How is Grandma taking care of you today?

With slushies, and jelly beans, and my blankie.

What did you do today? 

I got stuck in a bed.

What food do you like at the hospital?

I like mashed potatoes.

Anything else?

SYRUP!

um, and Pink Icecream!  I love it.

Is there anything fun to look at here?

No

What do you watch?

Easter bunny (Hop)

Do you have any friends in your bed with you?

Where'd my baby go?  I want to color with my baby.  I want to watch my baby.  I want to fix my baby.  I want to play my baby. I have Mr. Woof too and Bandit and his house.

What do you want to do tomorrow?

I wanna play with you

When should we go home?

I don't want to go home.  I want to stay here in the hospital.  Because, see.

Hmmm, Gabe!  We will see ...

Isolated

Last time I checked in here our family was home together recovery from surgery and thankful for it!  However, Gabe's little body wasn't as ready to be at home as his doctor originally thought it was. An infection in his incision sent him to the ER and landed him back in the hospital for awhile to really rest and heal.   Knowing what a fighter he is, I settled in with him ready to appreciate the 1-on-1 snuggle time again.  With two days of antibiotics under his belt he seemed to be perking up.  A visit from Gibson even got him out of bed and encouraged him to successfully try out legs a bit.  

 

{best buddy snuggles, good for the soul}

It came as a frightful surprise when he woke up in the middle of night #2 with a significant cerebral spinal fluid leak.  Any of you who have ever experienced a post epidural spinal headache will sympathize with our brave little guy's pain after 8 hours with a very active leak.  Our neurosurgeon's PA scheduled Gabe for a procedure to re-sew his back.  Stressful story short, by the time he woke from the procedure's anesthesia his back was already leaking again.  Our surgeon scheduled a Friday evening emergency surgery to re-open the many layers in his back to find the leak in his dura and repair it.  They found the leak, inserted a lumbar drain, and sent Gabe to the PICU intubated for the night to wait for a PICC line procedure.  

{friday night in the o.r. waiting room}

We have been in the PICU for several days now.  Gabe's incision seems to be healing much better than before.  He patiently endures hour after hour flat on his back while his spinal drain and neurological function are carefully monitored.  We are thankful for the big antibiotics heading through his central line to help fight the big infections that seem to have made their way into his spinal fluid during his original surgery and the other nasty infection that ate its' way through his skin to create the fluid leak.  Gabe's lab work continues to show improvements as well.

Today's encouragement included toddler scribbles in a coloring book, silliness with the nurses, sparkle in his eyes, a normal pediatric diet, and an increased desire to wiggle out of position to be more involved with what is going on around him.  

{paging dr.doggie}

Intensive care and isolation wear on us a bit, but we are reminded that God purposefully lead Hispeople into a place of isolation to develop their confidence in Him as their God. (Deuteronomy 8:2-3)

A friend of Kevin's put some of our thoughts into words, "I know some have been giving God a ration of sh*&! about this "small child suffering thing." (God) seems to be taking it well, something about Big picture, Resurrection, unfathomable life everlasting... 

Holy week in mind, we know God understands more suffering than all the little ones on this unit know.  He can handle our questions and frustrations.  He "gets" isolation. He knows the Big picture.

P.S: Sunday is coming!

Strength Renewed

When we go to a restaurant I spend way too much time deciding what to order.  I ask everyone else at the table what they think sounds good.  After much internal debate, and a request for the server to come back to me after going around the table, I order.  Seconds after the server walks away I have orderer's remorse.  Super trivial, I know. 

Making decisions isn't my thing.

I do much better with decisions that are completely out of my control.  Learning to roll with it and make the best of it, that's more my thing.

Even more difficult than making decisions for myself is making decisions that will impact my children and their lives forever.  Names? Ahhh!  Where to send them to school?  Ahhh!  

The last five weeks have been some of the most difficult for me.  Not only did Kevin and I have a big decision to make for our sweet Gabe, there wasn't a good option.  So, with two not so good options, we put them to the test.  We weighed the risks, the facts, and the opinions.  We met new doctors and therapists (mostly in search of someone who would validate my fears and agree with my plan to protect our babe from any more surgeries EVER).  We started new routines and medicine plans in hopes of a temporary solution.  With everything on the scales we needed to make a choice between two unfortunate options.  We struggled. More than just asking around the table (although we did a whole lot of that) we begged God for wisdom. Then, when it seemed our answer was as clear as it was going to be we prayed for peace.  

Writing about it here, sharing Gabe's story over the phone, calling in "our GEMS" via email and facebook, telling our neighbors we would be gone...

...I couldn't bring myself to do it.  Not this time.  It seemed a little too much like making my order and I wasn't ready to just be okay with what came out on the plate.

Today as we adjust to a new normal here at home it is time to accept what is and trust this prayerful decision was best for our babe.   

 

{post op, 3.13}

Last week Gabe had a lumbar laminectomy with a spinal cord detethering.  The surgery went smoothly.  While the symptoms he was experiencing will likely not reverse, the best potential outcome is to stop the deterioration of bladder and kidney function, and to provide relief from the pain in Gabe's feet and legs.  The risk of the surgery was loss of movement.  We are five days into recovery and Gabe is strong and courageous, and willing to admit what his momma couldn't "I'm afraid."   We hope for the best, trusting this is part of His plan for Gabe's future.

{post op day one, 3.14}

 

 {post op day two, 3.15}

At this point Gabe's pain is well managed with medicine.  His entertainment is well managed with fun new toys, great balloons, and cheerful siblings. He has found the strength to push up on his arms, move from laying to sitting, and to rock on all fours.  It may be days{maybe months}, but we are praying he finds the strength to weight bear on his legs again. We have always been aware of what a gift his mobility was, how hard he worked to get where he was, and how quickly all  that could change on this SB journey.  

{post op day four, 3.17}

We will praise Him in the recovery, knowing that no matter what our Gabe will soar on wings like eagles (...but, oh boy!, are we hoping he will learn again to bounce and not grow weary).

{crazy bounce 3.12}

Those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

Isaiah 40:31

3.9

{spring forward}