We are on day 4 post-surgery and things finally took a turn for the better.  To be honest, if I'd have known how much pain Cody would be in, and how grueling this would be for him, I would not have done the surgery.  With a child as fragile as him, I would have chosen not to put him through so much trauma and stress.  We are lucky that the 7.5 minute seizure didn't become an unstoppable seizure.  It was the seizures that freaked me out most during this recovery - having 20 seizures in 2 hours in the hospital and then a 7+ minute one the same day - made me really nervous that I'd just put him through too much and his body couldn't handle it.

What I've learned through this is that for Cody, these experiences are almost unbearably stressful.  He understands so little - and you can't explain anything to him.  He's kind of like an animal whose been injured or is caught in a trap.  You want to approach them to help them, but they try to bite you out of fear and/or pain.  After having the wound cleaned just one time on Friday - he would let no one near him until today.  Even if you were wanting to give him food or a drink and he was starving or thirsty - he kicked, clawed, and screamed you away.  And if you dared touch him, he start clawing at his own face and ripping his skin with his fingernails out of frustration.  So even to approach him meant risking him trying to claw himself to death.  He just had no coping skills and revereted to a completely protective, 'don't touch me or come near me' stance.  He has scratches all over his face, throat, lips and bite marks all over his hands from freaking out.  I feel so sorry for him.  Clearly the surgery site was causing him pain - but seeing him react this way was just so intense and impossible.  At the hospital he was on IV fluids, but once we got him home we just couldn't get fluids or food down him.  So all day yesterday I was calling the hospital - fearing dehydration - restraining him so we could get tiny syringes of gator ade down him.  And all the restraining just furthered his stress about being touched.  It has truly been a nightmare.  We've tried different pain meds to control the pain more, nothing seems to help enough.  And the risk with too much medicating is that he sleeps all day and won't take in food or drink either.  It's been so hard.  I've been up with him the last two night giving him syringes full of fluids while holding his arms down. 

But something changed today - maybe because the surgery wound isn't as sensitive.  He sat up on the bed and then stood up (like a newborn deer on wobbly legs) - and then stood and signed 'swing.'  I was thrilled.  At least he wasn't boycotting me and was trying to communicate.  So I put his swing up and nervously picked him up to put him in and he only flinched a little.  He's been asleep in the swing since.

But Don and I agree - we were NOT prepared for the intensity, trauma, and pain he would be in.  Not to scare anyone else off of G-tube surgery - I think we couldn't have known how Cody would react to the pain.  And I think the intensity of this experience lies mainly with the fact that we can't communicate what's happening to him - and he can't use words to tell us how he feels - so he resorts to self-injury or trying to injure us.  It is so frustrating and so sad.  I feel terrible for putting him through this.  And as I told Don, it's not like this surgery even deals with the things that have been the BIG issues we face like seizures, sensory issues, developtmental delay, gastro attacks.  Eating just became a primary issue a few months ago.   

We go in Thursday to learn how to feed him through the tube and attempt the first feeding.  But I am so scared that he won't let anyone near his tummy for weeks.  And he's barely getting enough food/drink to just stay hydrated in the meantime.  Even now I tried to give him some drink and as I approached him he started clawing his face.  Ugh.

I pray that someday we can look back and say it was all worth it based on results. 

On the flip side, the hospital stay had some warm moments.  There was a young couple sharing our room with a little baby who was only 45 days old.  She was born with her intestines outside her body.  Her parents have never had her home yet.  Her side of the room looked like a fairytale - a moblie with butterflies, home made pink blankets, a swing, a bouncer - they clearly wanted to make it a special place for her.  And here these young parents were day in/day out - tending to her every need - getting no sleep - hearing scary statements from doctors and trying to make sense of it all.  We all became friends in our 2 day stay and I have to say that witnessing their love for their baby - and seeing them navigate through the tough waters of doctors, advice, prognosis, surgeries, and more - God really showed me how poignantly He is revealed in the lives of special needs families.  Truly, I don't think I've ever seen a human more heroic than when they are faced with a very sick child.  It's when we're at our best.  In a world that touts 'self' and 'pleasure seeking' at all costs - in a world that tells us perfection and physical beauty is all that matters - here are parents mending broken dreams of the baby they thought would be perfect.  They're thrust into the unknown.  And yet it is a beautiful thing to see these parents discard any thought for themselves.  A mom and dad who don't care if they eat or sleep - but are just there for their child all day and all night endlessly.  That's what I saw in our shared room - and that's what I see every time I connect with the parent of a sick child. 

In God's economy, I'm sure it a beautiful thing to see - people who manage to get beyond their selfish natures and pour themselves out for another.  But when it's you doing the pouring out - it stinks.  :)   Yet I can see God's purposes and redemptive hand in all of it.  He sees the bigger picture.  And having a sick child provides the opportunity to be our best self. 

Course I'd rather be my stinky, selfish old self and have two healthy kids.  :)

with love,

Shawna