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.
Wednesday, November 30, 2011
Monday, November 28, 2011
In Cincinnati
Arrived in Cincinnati on Sunday (1 day early)... KP was a super traveler. He just turned into crazy kid when we got out of the car. Visited Dinosaur World...nice for him because he could run around and burn off some of that sugar (from his car treats). He also go to "dig" for fossils.. got two fossilized scallops and some other thing to take home.
Spent most of Sunday in the hotel room. Amazing what a four year old can do with a footrest with wheels ... who needs toys. Also liked playing his games for a while but ended up playing pretend for most of the day.
Today we got to Children's Hospital around 6:45am. We got taken back to pre-op right away...very efficient. The anesthesiology nurse practitioner was the first to arrive and start getting KP's history, then the administrative nurse, then the PICC line nurse... most of them looked like they should still be in high school :) I'm sure we'll see a lot more nurses and doctors before our trip is over.
KP getting a PICC line installed today which will work a lot better than trying to get an IV line in (since we'll be here 3 weeks). Margot & I got to go into OR & wait till they put him under ... what a rock star. KP told the crew that he wanted to move himself from the guerney to the table... then he laid down, closed his eyes & told them to put the stinky mask on (anesthesia is suppose to smell like strawberries but KP says it just stinks.).
We're waiting till he's in recovery .. estimate 73 minute - a computer estimates the time :) Will post again later today.
1045am - KP in recovery...we'll be able to see him as soon as the nurses are ready.
It took 2 tries but the PICC line is in just where they want it.
KP doing fine...a bit groggy... says he feels wobbly. Upset that he's not going back to the hotel but the nurse took his mind off of that by offering him a slushy :) These slushies count as clear liquid...yay... just a popsicle softened in micro with a bit of Sprite added.
Settling into our room for the next couple of weeks. We rought enough stuff to, hopefully, keep him busy and his mind off of food post-op. Today he starts his diet of clear liquids. They have him hooked up to a IV drip. They'll start giving him "go-lightly" to start cleaning out his bowels. They will need to insert a tube into his stomach (through his nose) since he wouldn't be able to the drink the amount they need to clean him out. Too bad they didn't think to insert the tube when he was in OR.
Good news - they can administer the "go-lightly" through his Malone. They'll give him a bagful, then give him a rest, then give him another bagful, etc. until he's cleaned out. He's content looking a shows on his ipod while sitting on the potty.
KP is now in bed eating popsicles and playing xbox games. Dr. Pena came in to introduce himself. The surgery is scheduled for 7:45am tomorrow, Nov 29. It should take 2 hours. Dr. Pena shook KP's hand and introduced himself to KP. KP was a bit preoccupied with playing his xbox game but did give him a thumbs up when Dr. Pena said "I'm your doctor and you are my patient. See you tomorrow."
KP will participate in a one time study. They're testing out a new way to monitor recovery. In addition to the traditional monitor "stickies" they place on his body he'll have one on his neck. They're testing to see how accurate the readings are compared to the traditional methods of monitoring. The nurse in charge of the study assured us that if KP feels any discomfort or has a problem with the "test strip" they will remove it.
Dr. Pena ordered continuous "go-lightly" so now KP is set up on a porta potty. He's OK since he can play his xbox games rather than merely watch his shows. He also ate all the orange popsicles so now they only have grape. He did ask if he could have regular food but Margot explained that he couldn't. He was OK as long as he could have a steady supply of popsicles and slushies. Don't know if they'll try broth later.
Midnight - they finished with the "go-lightly" but still had to irrigate his bowels... the nurse squirts 500 ml saline, a little at a time, up into his bowels then suck out the poop...blah. The nurse is getting medical attention outside the room...guess all this was too much for her. But KP is now finally tucked in and asleep. Margot will try to sleep now but since they take vitals every 4 hours I'm not sure how that'll go. (I'm in the nice, quiet hotel room getting text updates from her).
Tomorrow is the big day...will update after surgery..
Spent most of Sunday in the hotel room. Amazing what a four year old can do with a footrest with wheels ... who needs toys. Also liked playing his games for a while but ended up playing pretend for most of the day.
Today we got to Children's Hospital around 6:45am. We got taken back to pre-op right away...very efficient. The anesthesiology nurse practitioner was the first to arrive and start getting KP's history, then the administrative nurse, then the PICC line nurse... most of them looked like they should still be in high school :) I'm sure we'll see a lot more nurses and doctors before our trip is over.
KP getting a PICC line installed today which will work a lot better than trying to get an IV line in (since we'll be here 3 weeks). Margot & I got to go into OR & wait till they put him under ... what a rock star. KP told the crew that he wanted to move himself from the guerney to the table... then he laid down, closed his eyes & told them to put the stinky mask on (anesthesia is suppose to smell like strawberries but KP says it just stinks.).
We're waiting till he's in recovery .. estimate 73 minute - a computer estimates the time :) Will post again later today.
1045am - KP in recovery...we'll be able to see him as soon as the nurses are ready.
It took 2 tries but the PICC line is in just where they want it.
KP doing fine...a bit groggy... says he feels wobbly. Upset that he's not going back to the hotel but the nurse took his mind off of that by offering him a slushy :) These slushies count as clear liquid...yay... just a popsicle softened in micro with a bit of Sprite added.
Settling into our room for the next couple of weeks. We rought enough stuff to, hopefully, keep him busy and his mind off of food post-op. Today he starts his diet of clear liquids. They have him hooked up to a IV drip. They'll start giving him "go-lightly" to start cleaning out his bowels. They will need to insert a tube into his stomach (through his nose) since he wouldn't be able to the drink the amount they need to clean him out. Too bad they didn't think to insert the tube when he was in OR.
Good news - they can administer the "go-lightly" through his Malone. They'll give him a bagful, then give him a rest, then give him another bagful, etc. until he's cleaned out. He's content looking a shows on his ipod while sitting on the potty.
KP is now in bed eating popsicles and playing xbox games. Dr. Pena came in to introduce himself. The surgery is scheduled for 7:45am tomorrow, Nov 29. It should take 2 hours. Dr. Pena shook KP's hand and introduced himself to KP. KP was a bit preoccupied with playing his xbox game but did give him a thumbs up when Dr. Pena said "I'm your doctor and you are my patient. See you tomorrow."
KP will participate in a one time study. They're testing out a new way to monitor recovery. In addition to the traditional monitor "stickies" they place on his body he'll have one on his neck. They're testing to see how accurate the readings are compared to the traditional methods of monitoring. The nurse in charge of the study assured us that if KP feels any discomfort or has a problem with the "test strip" they will remove it.
Dr. Pena ordered continuous "go-lightly" so now KP is set up on a porta potty. He's OK since he can play his xbox games rather than merely watch his shows. He also ate all the orange popsicles so now they only have grape. He did ask if he could have regular food but Margot explained that he couldn't. He was OK as long as he could have a steady supply of popsicles and slushies. Don't know if they'll try broth later.
Midnight - they finished with the "go-lightly" but still had to irrigate his bowels... the nurse squirts 500 ml saline, a little at a time, up into his bowels then suck out the poop...blah. The nurse is getting medical attention outside the room...guess all this was too much for her. But KP is now finally tucked in and asleep. Margot will try to sleep now but since they take vitals every 4 hours I'm not sure how that'll go. (I'm in the nice, quiet hotel room getting text updates from her).
Tomorrow is the big day...will update after surgery..
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