Hurdles and Hurdles

I keep thinking to myself, after the NG tube, it will be easy.  After the IV, if they ever get it, the rest will be easy.  After the surgery, it will all be easy.  And after every hurdle, there seems to be another one lurking.

I didn't think recovery would be this difficult.  Last night was so tough for Kyrie.  The morphine wasn't lasting as long as it should (2 hours).  He would wake up whimpering to me.  I'd go to comfort him and within 5 minutes he was in unbearable pain.  We'd repeat the process all night long.  But eventually, it was too early for more morphine.  Too early for more Tylenol.  So the nurse called the surgeon, who approved another medicine.  Which then had to be sent through the pharmacy and sent up.  All while my boy was struggling and crying in pain.  We just cried together in his bed while we waited for the medicine.

Finally at 5:00am he was given a new medication, and he was comfortable.  It's a six hour med, and he's been on it all day. It has helped him so much more.  As the day progresses, he seems to be feeling better and better.

Oh, hello.  Last night sucked and we are tired.  

And then they need to draw blood.  Another hurdle.  This never goes well.  Today was no exception.  Only now his thrashing and screaming was coupled with 2 stomach incisions that caused him even more pain when he moved.  After a hearty attempt at two different spots, the lab techs said, "lets take a break."  At this point, Kyrie was in so much pain again that we needed more "between dose" narcotics.  And we knew they still needed blood.  When the second pair of lab techs came, they were successful much quicker.  Hurdle jumped.  Small boy passed out from exhaustion.  I was so thankful because he needed that rest so badly.

After the first blood draw.  Kyrie grunted and made weird noises and screams
through the whole thing.  Which I firmly believe is four year old talk for swear words.
I translated in my head for him.  

Kyrie's brothers came for a visit today.  They came between the blood draws, so Kyrie wasn't in the best of spirits.  He was uncomfortable and grumpy.  But he was happy to see his brothers.  It made him a bit homesick today, and has been complaining of missing his brothers and home all day.  I feel ya, honey.  I do.

Finally cashed out for a well deserved nap. 

Our biggest hurdle right now is that Kyrie's bowels haven't really woken up.  And this child wants to EAT.  I knew he would.  The doctor foolishly told me it wouldn't be an issue because Kyrie would most likely feel nauseous until his stomach and bowels woke up and started working.  However, what the doctor doesn't know that I do, is that Kyrie has lived four years of his life feeling nauseous before he was diagnosed with Hirschsprung's.  When you love something like Os, and you know the hospital has them, it's pretty much all you want in the world when you're four.  A tummy ache will not stand in your way.

Unless of course you need to poop or pass gas first and this is something you've never been able to do on command your whole life.  He's made 4 or 5 trips to the bathroom to try.  But at this point, pushing hurts his stomach incisions.  He wants to eat so bad that he keeps trying, but no luck yet.  This also means that Dave and I have had to be very stealth with our eating today.  Seeing food that he can't have sends Kyrie into tears.  So we take turns eating meals in the hallway lobby.  Today Kyrie told me very suspiciously that my breath smelled like M&Ms.  "Huh.  That is pretty weird!" I said as I walked backwards to the bathroom to brush my teeth.  And when I took a drink of ginger ale, something Kyrie wouldn't even want to try if I let him drink pop, he yelled at me.  "Mom!  You can't have that unless you are going to let me eat sumthin!"  Touche' Kyrie.  My bad.

Took some walks this afternoon and sat somewhere besides the bed!
Big steps for a little man after surgery!  Proud of him!

The worst is that Kyrie won't even get to eat food once his bowels do start working.  He'll have to start with clear liquids, which will be torture for a boy that really only likes to drink milk - an unclear liquid.  On Thursday when he was on clear liquids for a bit I talked him into trying Apple Juice.  What child won't drink apple juice??  Let me introduce you to my son Kyrie.  No jello.  No soup broth.  No juice.  That leaves him with water.  Also not his favorite.

I truly don't know why I thought after surgery would just be a boring few days while we waited to go home.  Maybe because his colostomy recovery was so much more simple.  We felt like it was a lot of waiting to go home.  Well, this time is not that.  It's hard.  It's hard seeing your child in pain.  It's hard not being able to feed them when they're hungry.  It's hard watching them get poked and prodded and hearing that they just want to go home with their brothers.  This shit is hard.

Please pray for the hurdles we have ahead of us.

Pray for a good night sleep for Kyrie tonight with little pain.

Pray for Kyrie's stomach and bowels to wake up and start moving.  And pray for that process to be as pain free as possible.

Pray for Kyrie to be patient for when he can finally eat.

Pray for his home sickness and heart as he misses his brothers.

And please pray for tomorrow when they remove his catheter.  I can't even imagine how that is going to go down.

While your at it, pray for me and David.  Kyrie is so much tougher than we are, and we are the grown ups.  Pray for us to be there for our boy in every way he needs.  And to be there for our boys at home as well.  They're missing Kyrie and mom and dad too.

It's amazing how your texts and Facebook messages lift us up.  Thank you for checking in all the time and supporting us.  It means the world!!

My ray of sunshine showed some glimpses of his silly self.  "My tummy is being a
goofball, mama."  (Because it hurts...)  "I'll ONLY poop if you give me some food first."
(Good bargaining my man.  Wrong order though.  Sorry.) 
"Mama, you're being a beast." (No idea how to explain that one.  He's just weird.)