Nov 29 surgery day

Yesterday, Nov 29, was a busy day. They came to get KP around 8am to take him up to the OR. He was wrapped in his dragon blanket with a warm blanket on top - like an Everett burrito.

He got out of the OR a little after 11am. Dr. Pena said the surgery took longer than expected because of all the scar tissue - that's our boy, a scar tissue producing machine. And there was a surprise -- they found a sphincter muscle very near his scrotum. When KP had his first pull-through, Dr. Renard didn't find a sphincter muscle so he attached to the little dimpled area where a sphincter might have been ... but Dr. Pena found one. HAe & his team have done thousands of pull-throughs...experience counts for something. The pull-through was rerouted so it now attaches to the sphincter. This gives it a good attachment point AND we don't have to deal with old scar tissue.

Dr. Pena said "nothing to eat or drink...not even water" for 7-10 days. Wow... now that's going to be a problem. They'll start administering nutrition through his PICC line sometime tomorrow. He also said absolutly no straddling anything - fences, bicycles, motorcycles, horses, cows, camels...nothing for one month... so effectively till Jan 1. KP has a long incision right down between his butt cheeks..OW. Dr. Pena said after the first couple of days KP shouldn't feel any pain and will probably want to start jumping around...we have to prevent him from doing so.. another wow.

KP was a bit long in Recovery. They had to set him up with a pain meds pump before we could go back - one pushes a button for doses of pain meds (timed so you can't overdose). They said to use it when he seems uncomfortable but not while he's sleeping.

When we went to recovery there was no one on the gurney. We looked around an KP was in the arms of a big male nurse. He said KP woke up and told the nurse he wanted him to pick him up...so that's what he did. They are VERY accommodating at this hospital - whenever possible they'll do what the kids prefer. KP was one bundle of dragon blankie, tangled wires & tubes. When he saw Margot, KP wanted her to hold him... then he kept yelling "stand up Mommy" even when she was standing. She explained to him that she wasn't as tall as the nurse and that she WAS standing...so KP said it was OK to put him on the table.

Usually they keep him pretty medicated on day one post-op and today was no exception. KP's body was just not cooperating. He was still wonky and delirious, at times but he wasn't having this resting stuff. He was on the move... he wanted to sit up, play his games, watch his shows... he refused to urinate in his diaper or in the urinal tube..he had to get up & sit on the porta potty. Whenever he got done with the potty, Margot hit the pain med button & KP would drift off for a short bit - but not a deep sleep. The anesthesia RN came by to check in the evening and said she'll prescribe a muscle relaxant. He might be having muscle spasms that are keeping him awake but can't tell us this (he has been saying he feels like he has to poop...so maybe he is having spasms). The meds should calm that down ... we'll see.

And about keeping him occupied so he doesn't think about eating... it's NOT working. He's been asking for popsicles and breakfast since he got back to his room (so far Margot has been able to get him off the subject for a bit). Since he isn't getting any nutrition, only hydration, through his PICC, his tummy is hungry. Margot told him that tomorrow he can have something to "eat" through his tube that will make his tummy happy. KP said he wants something through his mouth. We tell him "Dr. Pena's orders"... I think Dr. Pena will get an earful tomorrow :)

On another note - we're in Ronald McDonald House...yay! It's a big house around the corner from the hospital. They have shuttles in the evening every half-hour (not the nicest of neighborhoods). There are around 12 paid staffers (someone available 24/7) & everything else is done by volunteers...WOW. We have a one bed room right now but hope to get a larger room closer to KP's release date. The staff and volunteers are really friendly & helpful. There are kitchens to prepare meals but volunteers provide dinner... this time of year volunteer groups seem to be providing 3 meals a day (you get a schedule every Sunday). They ask for $25/night donation - emphasize that this is only a donation & if you cannot manage it...no problem. The kitchen always has bread, milk & eggs - all donated. They also have a pantry of donated goods - canned goods, condiments, staples like flour, sugar, chocolate... Natalie, the evening manager, said to treat it like your home...just clean up after yourself. There's a sign, in the kitchen, saying not to hand wash anything due to sanitary concerns. I asked what to do with one dirty coffee cup. They said just to put it into any available dishwasher...when it fills up, the person who puts the last dirty dish in should start the dishwasher...just like at home.

When KP is released, he'll like this place... lots of stuff to do... lots of activities...craft rooms, dvds, outings, etc. This is great place...much better than a hotel.