We’ve Been Here Before

On Thursday Aleck’s surgeon was thrilled with how the surgery went and how his body took to the surgery. She practically came dancing out of the OR.  Everything went better than expected and the results looked terrific.  We even took a picture together.  As smiling as we were we knew only part 1 was over and now we were heading into part 2, recovery at the hospital.

Today is day number five of being at Lurie.    Every day it’s been a different hurdle to overcome.  At first he came out all quiet and sleepy and we were so relieved.  The memories of him screaming for 30 hours are still fresh in our minds after his open reduction surgery almost 6 years ago.  I had to sit next to him with my hand on his head in order to keep him calm, going to the bathroom became a dangerous and very noisy affair.  So we were all breathing nicely to have such a peaceful little dude that he looked up at his Uncle Jeremey and said, “Where’s the rest of your crew,” referring to my niece, nephew and his Aunt Gerri.

But then what follows next feels like a constant freight train of issues and variables that needed to be corrected.  They had the wrong size catheter in him so he wasn’t peeing and was having terrible tummy troubles.  The need to poop caused him inconsolable pain for an entire day until he started squeezing them out like it was nobody’s business.  Around his rib cage, we’ve been playing back and forth with the body splint, so it isn’t digging into him.  He’s been refusing to take oral medication.  His catheter came out and peeing is painful.  His epidural came out and now the real pain has reared it’s ugly head. Then he just started yelling and shouting at various intervals so we’ve upped his oxycodone.

We called in the Orthopedics resident nurse to talk to us about if anything looks off or if there is anything else we can do.  As she’s talking through all of this she says how this screaming pain in intervals is at this point. When the pain button wears off it tends to send a jerking reaction through his body and then he wakeds up screaming in pain.  She talked about how he’s tired, being woken up and messed with every 2 hours is exhausting.  How he’s been in an unfamiliar place, and while this is going on he’s screaming about how he’s homesick and wants to go home.  Right.  Yup.  Yesterday he started having people announce who they were and why they were here when they entered the room.  He’s done. He’s at a total nervous system breakdown and so are we.  So we’ve put in the order to turn off the pain button even though it was hit 33 times in a 12 hour period yesterday.  And we’ve put in the order to have the valium as a pill form so that we can crush it into pudding and give it to him in one bite.  It’s time to be done.  We are leaving no matter what.

This exact same thing happened to us when he had his tonsils and adenoids taken out.  What was supposed to be a 24-hour hospital stay turned into 3 days.  Why?  They wouldn’t let us go because he wouldn’t eat or drink.  And for a 14-month-old who already had eating problems, we finally figured out that there was no way he’d eat in this environment and it was time to pull the plug.  The minute we walked through the door at home he started eating immediately.

After I publish this I’m jumping in the shower. I’m packing up our bags, I’m collecting our things.  My goal is to spend the rest of the day to get him home.  Besides the drug cocktail, he’s currently on there is truly nothing else they can do here.  We need to go home as soon as possible. Fingers crossed we get out today, I will keep you posted.

It looks like our Meal Train is filling up but you can go here:  https://takethemameal.com/VCYW9605

Thanks for all of your continued concern and support.  It’s time to start part 3 of this process, it’s definitely time to go home.   Once we get home we’ll be there for about 6 weeks before inpatient rehab starts. That’ll be a whole new ballgame.