Thu, Dec 15 was a rainy day so we went to Museum Center instead of the zoo. We met up with Thomas & Zoryana as well as Melissa Miller, her husband & daughter Kaitlyn. The kids had a great time running around... they especially liked the trains in the holiday hall. That evening, at the RMH, there was a magician show for the kids. KP was starting to play Candy Land when one of the magicians came up to the table & showed him a slight of hand trick... after that it was put the game away & let's go watch their show (he said earlier he wasn't interested). He laughed, shouted out responses and generally had a good time.
Fri, Dec 16 - D (for decision) day.. went for an xray at 9am. They are really organized... check in via kiosk... a couple minutes later the receptionist called Everett's name, banded him & off we went to xray. Next stop Dr. Pena's office. After a short wait he arrived. KP was started to cry when he asked him to get on the examining table. Margot had told him that Dr. Pena would do "probies".. which meant he would have to dilate his newly formed anal opening. After his first pull-thru operation KP had to have "probies" for many months to keep slowly enlarge the opening and then keep it from closing. Dr. Pena told him don't worry, he wouldn't hurt him (Margot wondered how he was going to pull that off). He looked at KP's incision and said it looked good. When Margot asked about dilation, he said no dilation... ever! Margot didn't know whether to hold KP & keep him from falling or hug Dr. Pena. KP was SOOOO happy. He said that if Daddy wanted to do "probies" he would tell him "No, Dr. Pena said no "probies." The only other instruction we received was to use double diapers for another 2 weeks.... no straddling till after Dec 29.
After the July bowel management session, Dr. Pena indicated that using laxatives to keep KP clean would probably not work because of KP's condition (very high imperforate anus). Now he told her to call the bowel management clinic in 6 -12 months to have another try at the laxative regime... though he's not promising it would work.
We left Cincinnati right after lunch. We drove until we reached Mayfield, KY (Margot never ever wants to go back there) and spent the night. Today we planned to drive to Hot Springs, AK and visit the train museum & a hands-on children's museum BUT decided once we got there that we could make it home. So we pushed through and arrived around 7pm... yay. End of Cincinnati saga...
Thank you to doctors, nurses & staff at the Cincinnati Children's Hospital and to the staff at the Cincinnati Ronald McDonald House.
Saturday, December 17, 2011
Wednesday, December 14, 2011
Almost ready to leave Cincinnati
The past couple days have been laid back days... meaning we didn't leave the premises ... not that we actually rested since that's hard to do with an active 4 year old. On Monday, Margot wasn't feeling well. She went to Urgent Care & found out she had an ear infection - both ears. Luckily, she didn't have strep throat. She was out of commission for the day.
I introduced KP to the outdoor playground. He LOVES being outdoors. We just bundled up and went out. He spent a couple hours pretending he was Captain Hook Everett... leader of the pirates. There is a bell garden - 4 bells of different sizes - KP loved ringing them... alerting his pirates that he was coming aboard... wonderful to have such an active imagination. We played in the indoor playroom & went in search of the "Elf on a shelf." We never did find it today but it kept KP busy running around & looking.
About 5pm, he noticed the train wasn't running so we went to the front desk & asked about it. He was pretty patient while they got the train ready to run. We met a Mom with her 2 year old, Erin, who was the same size as KP... and just as active. They will be here for at least 5 months - he's getting a transplant.
Tuesday, Margot went to a parents' meeting (bowel management in session this week) in the morning. KP & I hung out and played. Going out to the playground is a good way to bribe him to get out of this pajamas (it must be hereditary...I'd stay in my nightgown all day if I didn't need to go out). After lunch we played games - Chutes & Ladder, Candy Land, go fish (most of the fish were missing)... also put together some puzzles.
Tuesday evening we signed up to take the shuttle to the zoo. They're having their Festival of Lights. We met up with Thomas Evanoika (single dad) and his daughter Zoryana (3 1/2 year old ball of fire). They're here for bowel management - she's in the enema program. The lights were beautiful. KP actually sat on Santa's lap AND agreed to have his picture taken... Stephen dodged the bullet there. Margot told him if she couldn't get KP to take a photo with Santa, he would have to sit on Stephen's lap and she'd photoshop a Santa suit on Stephen.
We didn't see many animals since it was dark but we went through the birdhouse ... interesting. To encourage breeding they keep the penguin quarters dark most of the time to simulate the same light conditions they're use to in the winter. There were huge rooms for birds from different continents filled with trees & shrubs ... they're free to fly/walk around.
We rode the train and watched a puppet show. We had to walk fast to get to the shuttle... the time flew by. KP had a grand time. When he got back to RMH he said he as hungry ... his mouth felt like having a cookie. He's going to miss having sweets whenever he wants... when he gets home it'll be back to his normal diet... might go into sugar withdrawal:)
Maybe on Thu. we'll go back to the zoo during the day... if it's not raining hard.
I introduced KP to the outdoor playground. He LOVES being outdoors. We just bundled up and went out. He spent a couple hours pretending he was Captain Hook Everett... leader of the pirates. There is a bell garden - 4 bells of different sizes - KP loved ringing them... alerting his pirates that he was coming aboard... wonderful to have such an active imagination. We played in the indoor playroom & went in search of the "Elf on a shelf." We never did find it today but it kept KP busy running around & looking.
About 5pm, he noticed the train wasn't running so we went to the front desk & asked about it. He was pretty patient while they got the train ready to run. We met a Mom with her 2 year old, Erin, who was the same size as KP... and just as active. They will be here for at least 5 months - he's getting a transplant.
Tuesday, Margot went to a parents' meeting (bowel management in session this week) in the morning. KP & I hung out and played. Going out to the playground is a good way to bribe him to get out of this pajamas (it must be hereditary...I'd stay in my nightgown all day if I didn't need to go out). After lunch we played games - Chutes & Ladder, Candy Land, go fish (most of the fish were missing)... also put together some puzzles.
Tuesday evening we signed up to take the shuttle to the zoo. They're having their Festival of Lights. We met up with Thomas Evanoika (single dad) and his daughter Zoryana (3 1/2 year old ball of fire). They're here for bowel management - she's in the enema program. The lights were beautiful. KP actually sat on Santa's lap AND agreed to have his picture taken... Stephen dodged the bullet there. Margot told him if she couldn't get KP to take a photo with Santa, he would have to sit on Stephen's lap and she'd photoshop a Santa suit on Stephen.
We didn't see many animals since it was dark but we went through the birdhouse ... interesting. To encourage breeding they keep the penguin quarters dark most of the time to simulate the same light conditions they're use to in the winter. There were huge rooms for birds from different continents filled with trees & shrubs ... they're free to fly/walk around.
We rode the train and watched a puppet show. We had to walk fast to get to the shuttle... the time flew by. KP had a grand time. When he got back to RMH he said he as hungry ... his mouth felt like having a cookie. He's going to miss having sweets whenever he wants... when he gets home it'll be back to his normal diet... might go into sugar withdrawal:)
Maybe on Thu. we'll go back to the zoo during the day... if it's not raining hard.
Monday, December 12, 2011
KP attended his first pro football game
Yesterday, Dec 11, Margot took KP to Bengal stadium to see the Bengals & Texans (Houston) play. She won 2 tickets from the RMH. They bundled up and headed for the stadium (Stephen & Frances drove them.). He didn't try to run ahead... held hands until they made the long trek to their seats.
KP had a WONDERFUL time. He met Bengal Santa Clause..but refused to let Margot take a photo. He loved standing up & cheering and waving his giant Bengal tiger paw. Most of all he loved eating cotton candy & throwing peanut shells on the ground after he cracked them open. He lasted to the beginning of the 4th quarter... then the sun moved and they were sitting in the shade... and he ran out of food.
He told Margot he was cold & wanted "inside, inside.."... then he ate a hotdog.. then wanted to leave. A very good day. Stephen & Frances drove them home. Then they said good bye... had a nice trip visitin KP.
On Dec 10, we started out late because the "therapy dogs were coming at 1pm. KP kept asking us if it was 1pm yet... but when they arrived, he didn't want to pet them, just look.. from this angle & that, from upstair, around the corner, etc. Finally, he sat down to brush a huge Newfoundland named Jake... then he was off. Afterwards we to the Fireman's museum where he sat in a fire truck, blew the horn, turned on the sirens, made the lights go on, etc... it was a trick to get him to leave.
Then we ran some errands... not too much fun for the little guy. We discovered Jungle Jim's market. It's a warehouse sized store with items from around the world.. kind of like Cost Plus World Market's food section on steroids. Definitely a destination. I could have spent half a day exploring. KP was happy because he rode in a "car" shopping cart & got a truck filled with toosie rolls.
KP had a WONDERFUL time. He met Bengal Santa Clause..but refused to let Margot take a photo. He loved standing up & cheering and waving his giant Bengal tiger paw. Most of all he loved eating cotton candy & throwing peanut shells on the ground after he cracked them open. He lasted to the beginning of the 4th quarter... then the sun moved and they were sitting in the shade... and he ran out of food.
He told Margot he was cold & wanted "inside, inside.."... then he ate a hotdog.. then wanted to leave. A very good day. Stephen & Frances drove them home. Then they said good bye... had a nice trip visitin KP.
On Dec 10, we started out late because the "therapy dogs were coming at 1pm. KP kept asking us if it was 1pm yet... but when they arrived, he didn't want to pet them, just look.. from this angle & that, from upstair, around the corner, etc. Finally, he sat down to brush a huge Newfoundland named Jake... then he was off. Afterwards we to the Fireman's museum where he sat in a fire truck, blew the horn, turned on the sirens, made the lights go on, etc... it was a trick to get him to leave.
Then we ran some errands... not too much fun for the little guy. We discovered Jungle Jim's market. It's a warehouse sized store with items from around the world.. kind of like Cost Plus World Market's food section on steroids. Definitely a destination. I could have spent half a day exploring. KP was happy because he rode in a "car" shopping cart & got a truck filled with toosie rolls.
Saturday, December 10, 2011
Dec 10
Well, Mr. Man surprised us again...which should no longer be a surprise. He was scheduled to be released on Friday... but was released on Wed (remember surgery was on Nov 29).
Around 5pm on Dec 6, Dr. Pena came by to check out KP's incision...everything looked good. KP asked him "When can I eat something in my mouth?"...and Dr. Pena said "right now." Thought they'd start him off with a restricted diet...nope.. anything he wanted. Immediately, he asked his nurse for graham crackers & apple juice.. which he promptly inhaled. Then he ordered: mushroom & cheese pizza, veggie plate, popcorn & chocolate milk. Margot said she'd bet $10 that he'd only eat a bite. She would have lost that wager if anyone had taken her up on it. He didn't eat the whole thing but did make a major dent (they sent corn instead of popcorn but he still ate a few spoonfuls.). That evening he had is first bowel movement since surgery. It didn't seem to hurt...he told me he thought he pooped his diaper but wasn't sure...a bit later he said he was sure & wanted it changed.
He slept till about 330am on Dec 7 & woke up complaining that his bobo hurt. His diaper was wet so the urine was probably bothering his incision. Then we had a prolonged argument about putting on his diaper... he insisted that HE needed to take a photo of his "sitches" on his bobo for his dad..with my iPhone. Since that was physically not possible we were at an impasse (the nurse came in to see if there was anything she could do since he was SCREAMING)... I was finally able to distract him & get him back to bed. After that, he still complained about his bobo hurting (seemed like it was just itchy) so he got some ibuprofen and all was right with his world. He watched 101 Dalmations until he fell asleep again. He asked the nurse when he could order breakfast...his tummy was hungry.
Around 7am, Dr. Pena's assistant & her team came in. She said if KP's AM irrigation went well, we'd be released! Margot scrambled & talked to the RMH manager to see if they had a larger room available. Meanwhile, KP woke up and ordered raisin bran, bagel, fruit & glazed doughnut. I started bringing our belongings back to our room at RMH. While I was there unloading, I found out we got a new room...yay! So I moved all our stuff & cleaned our old room....then started to transport more stuff from the hospital to RMH...we had enough stuff for a family of 12 :) Amazing how many electronic devices, book, toys & jammie bottoms this kid has. By 1pm we were settled in our new room at RMH.
Later that day, I heard my name (rather Susan Aishiteru...huh).. over the loudspeaker... the receptionist said I had a package???... but when I turn around I saw Stephen & Frances. They had flown in to surprise KP at the hospital & got a surprise themselves...he wasn't there! He was SOOOOOO happy to see them. He immediately took them on a tour of RMH...Mommy & Bachan you stay there-pointing to the dining room.
The past few days has been a mixture of halos and horns... at least one major meltdown occurs per day. Between the meltdowns KP is a pleasure to be with. I think the lack of routine is part of the problem....the other part is his being 4 years old :)
Dec 8 we went to Wright Patterson Airforce Base museum. We only saw a small portion of it...very interesting. In some sections you can walk up close to the planes (you could touch them if there weren't signs asking that you not.). You can go inside several of the former Presidents' planes. KP liked anything you could walk inside or sit inside. Major meltdown while in the restaurant for late lunch. KP almost didn't get lunch (about 45 min ...in and out of car with Mommy). Finally agreed to terms (yes, it's like a union negotiation) & came back in and ATE almost a full portion of fried rice, ginger chicken, creme filled wonton... didn't think that much food could fit into that skinny kid.
Dec 9 we went to Cininnati Museum Center. What an AMAZING, FUN place! So much for kids, of all ages, to do & see - lots of exhibitions, lots of hands-on play. KP liked running through the caverns, playing with water & sand, pretending in their HUGE kid's town. Mamaw & Papaw were ready to drop. Major meltdown before we left RMH - BIG argument about eating lunch AND putting on shoes. KP & I went back to room until he agreed to put on his shoes (about 30 min before he got really bored sitting on his bed)
Today is another day...we'll see what happens. Margot got up to brush her teeth & when she got back, KP had taken her pillows and made a "bed" on the floor... it'll be interesting :)
Around 5pm on Dec 6, Dr. Pena came by to check out KP's incision...everything looked good. KP asked him "When can I eat something in my mouth?"...and Dr. Pena said "right now." Thought they'd start him off with a restricted diet...nope.. anything he wanted. Immediately, he asked his nurse for graham crackers & apple juice.. which he promptly inhaled. Then he ordered: mushroom & cheese pizza, veggie plate, popcorn & chocolate milk. Margot said she'd bet $10 that he'd only eat a bite. She would have lost that wager if anyone had taken her up on it. He didn't eat the whole thing but did make a major dent (they sent corn instead of popcorn but he still ate a few spoonfuls.). That evening he had is first bowel movement since surgery. It didn't seem to hurt...he told me he thought he pooped his diaper but wasn't sure...a bit later he said he was sure & wanted it changed.
He slept till about 330am on Dec 7 & woke up complaining that his bobo hurt. His diaper was wet so the urine was probably bothering his incision. Then we had a prolonged argument about putting on his diaper... he insisted that HE needed to take a photo of his "sitches" on his bobo for his dad..with my iPhone. Since that was physically not possible we were at an impasse (the nurse came in to see if there was anything she could do since he was SCREAMING)... I was finally able to distract him & get him back to bed. After that, he still complained about his bobo hurting (seemed like it was just itchy) so he got some ibuprofen and all was right with his world. He watched 101 Dalmations until he fell asleep again. He asked the nurse when he could order breakfast...his tummy was hungry.
Around 7am, Dr. Pena's assistant & her team came in. She said if KP's AM irrigation went well, we'd be released! Margot scrambled & talked to the RMH manager to see if they had a larger room available. Meanwhile, KP woke up and ordered raisin bran, bagel, fruit & glazed doughnut. I started bringing our belongings back to our room at RMH. While I was there unloading, I found out we got a new room...yay! So I moved all our stuff & cleaned our old room....then started to transport more stuff from the hospital to RMH...we had enough stuff for a family of 12 :) Amazing how many electronic devices, book, toys & jammie bottoms this kid has. By 1pm we were settled in our new room at RMH.
Later that day, I heard my name (rather Susan Aishiteru...huh).. over the loudspeaker... the receptionist said I had a package???... but when I turn around I saw Stephen & Frances. They had flown in to surprise KP at the hospital & got a surprise themselves...he wasn't there! He was SOOOOOO happy to see them. He immediately took them on a tour of RMH...Mommy & Bachan you stay there-pointing to the dining room.
The past few days has been a mixture of halos and horns... at least one major meltdown occurs per day. Between the meltdowns KP is a pleasure to be with. I think the lack of routine is part of the problem....the other part is his being 4 years old :)
Dec 8 we went to Wright Patterson Airforce Base museum. We only saw a small portion of it...very interesting. In some sections you can walk up close to the planes (you could touch them if there weren't signs asking that you not.). You can go inside several of the former Presidents' planes. KP liked anything you could walk inside or sit inside. Major meltdown while in the restaurant for late lunch. KP almost didn't get lunch (about 45 min ...in and out of car with Mommy). Finally agreed to terms (yes, it's like a union negotiation) & came back in and ATE almost a full portion of fried rice, ginger chicken, creme filled wonton... didn't think that much food could fit into that skinny kid.
Dec 9 we went to Cininnati Museum Center. What an AMAZING, FUN place! So much for kids, of all ages, to do & see - lots of exhibitions, lots of hands-on play. KP liked running through the caverns, playing with water & sand, pretending in their HUGE kid's town. Mamaw & Papaw were ready to drop. Major meltdown before we left RMH - BIG argument about eating lunch AND putting on shoes. KP & I went back to room until he agreed to put on his shoes (about 30 min before he got really bored sitting on his bed)
Today is another day...we'll see what happens. Margot got up to brush her teeth & when she got back, KP had taken her pillows and made a "bed" on the floor... it'll be interesting :)
Tuesday, December 6, 2011
He's eating!
Today Dr. Pena examined Everett and declared he was OK to eat & drink anything he wants. His first request was for graham crackers and apple juice. While he was eating he asked Mom to order dinner... mushroom pizza, veggie plate, popcorn & chocolate milk. They got everything right except the popcorn..he got kernel corn instead...but he still ate some. He topped it off with a grape Popsicle. Now I hope he doesn't get sick during the night.
Everett is doing great. Now that his veins aren't being pumped full of sugar, he might calm down a bit...here's hoping. The first time I got him down from bed and told him he could come with me to get water he pointed to the pole. When I said he wasn't attached, I saw the light bulb go on... he's going to be more difficult to keep track of.
Tomorrow he begins his enema regiment again. He'll have 2 enemas (his normal amount cut in 1/2 and administered 2 times a day.). Not sure when he'll start once a day enemas but I'm sure Dr. Pena or his staff will let us know.
Speaking of Dr. Pena.. when he came in KP showed him a pair of "googly" glasses (eye balls attached to slinkies). Dr. Pena immediately put them on and started talking to KP...missed a great photo opportunity. KP says he'll miss Dr. Pena when he leaves .. great surgeon.. great with kids.
Now KP is tucked in with a warm blanket... watching 101 Dalmatians...
If everything goes as scheduled he'll be release on Friday. We'll all move into the Ronald McDonald house. He has a post-op appointment scheduled on Dec 16th.
Everett is doing great. Now that his veins aren't being pumped full of sugar, he might calm down a bit...here's hoping. The first time I got him down from bed and told him he could come with me to get water he pointed to the pole. When I said he wasn't attached, I saw the light bulb go on... he's going to be more difficult to keep track of.
Tomorrow he begins his enema regiment again. He'll have 2 enemas (his normal amount cut in 1/2 and administered 2 times a day.). Not sure when he'll start once a day enemas but I'm sure Dr. Pena or his staff will let us know.
Speaking of Dr. Pena.. when he came in KP showed him a pair of "googly" glasses (eye balls attached to slinkies). Dr. Pena immediately put them on and started talking to KP...missed a great photo opportunity. KP says he'll miss Dr. Pena when he leaves .. great surgeon.. great with kids.
Now KP is tucked in with a warm blanket... watching 101 Dalmatians...
If everything goes as scheduled he'll be release on Friday. We'll all move into the Ronald McDonald house. He has a post-op appointment scheduled on Dec 16th.
Thursday, December 1, 2011
December 1
Can't believe it's already Dec 1. Everett is doing well... would one expect any less from a rock star?!
NOV 30:
In the morning, he was still hooked up to monitors & wires/tubes so he was confined to the room. The "toy lady" came to take a toy order from him. He ended up getting a big firetruck, a big ambulance, a box of Legos and a couple of superhero action figure. He was having a great time.
Since he didn't really need his PCA (patient controlled analgesia)- we only pushed the button twice since midnight & that was after a procedure, just in case. The nurse got orders in to unhook it. They plan to give him IV Tylenol which means he's free to wander around, with one of us controlling his IV pole. Pretty good at one day post-op.
His first request,after be unhooked, was to go to the activity center. He had a wonderful playing pool, pretending in the kitchen and playing the piano. We went there about an hour before closing...he wanted to hug every nurse & doctor he saw on the way.
His incision looks great. Dr. Pena came to visit & check up on him. He shook Everett's hand ... then Everett said "Dr. Pena, you talk crazy"... then he & Dr. Pena had a brief conversation about who talked crazier Dr. Pena or Everett. The talk ended with KP giving Dr. Pena a hug and a wave good-bye.
He is still asking to eat. Margot had been saying they'll feed him through his tube because they wanted to keep his "bobo" asleep. Later in the evening they started "feeding" him through his PICC line. He told Margot what kind of food he thought was going into his tummy.
DEC 1:
This morning I woke up to find KP sleeping with his head at the foot of the bed... luckily no leads were pulled out. He woke up pretty happy and then told me to go back to bed ... then fell asleep again. He woke up later saying he was going to hit the nurse call button because one of the alarms was going off a bit too long (in his opinion). He also learned to operate the bed controls this morning...one of the nurses used the buttons on the inside of the bed to raise his head... foolish nurse.
After breakfast I found Margot & KP in the activity room. He was playing pool and working on the computer. He loved playing in the kitchen...making toast and pizza. Playing with pretend food doesn't seem to bother him or make him think of eating. When we were about to leave he discovered the paint easle... next time he wants to paint..that should be interesting.
Aunty Jessic, Uncle Colin & Aidan sent him a cool gift.. three balloons (Cars, Square-pants Sponge Bob & Get Well) and a magnetic Cars puzzle pack & coloring book. Such a good idea since the puzzle pieces stick to the box & don't get lost. He is having a lot of fun with it now.
NOV 30:
In the morning, he was still hooked up to monitors & wires/tubes so he was confined to the room. The "toy lady" came to take a toy order from him. He ended up getting a big firetruck, a big ambulance, a box of Legos and a couple of superhero action figure. He was having a great time.
Since he didn't really need his PCA (patient controlled analgesia)- we only pushed the button twice since midnight & that was after a procedure, just in case. The nurse got orders in to unhook it. They plan to give him IV Tylenol which means he's free to wander around, with one of us controlling his IV pole. Pretty good at one day post-op.
His first request,after be unhooked, was to go to the activity center. He had a wonderful playing pool, pretending in the kitchen and playing the piano. We went there about an hour before closing...he wanted to hug every nurse & doctor he saw on the way.
His incision looks great. Dr. Pena came to visit & check up on him. He shook Everett's hand ... then Everett said "Dr. Pena, you talk crazy"... then he & Dr. Pena had a brief conversation about who talked crazier Dr. Pena or Everett. The talk ended with KP giving Dr. Pena a hug and a wave good-bye.
He is still asking to eat. Margot had been saying they'll feed him through his tube because they wanted to keep his "bobo" asleep. Later in the evening they started "feeding" him through his PICC line. He told Margot what kind of food he thought was going into his tummy.
DEC 1:
This morning I woke up to find KP sleeping with his head at the foot of the bed... luckily no leads were pulled out. He woke up pretty happy and then told me to go back to bed ... then fell asleep again. He woke up later saying he was going to hit the nurse call button because one of the alarms was going off a bit too long (in his opinion). He also learned to operate the bed controls this morning...one of the nurses used the buttons on the inside of the bed to raise his head... foolish nurse.
After breakfast I found Margot & KP in the activity room. He was playing pool and working on the computer. He loved playing in the kitchen...making toast and pizza. Playing with pretend food doesn't seem to bother him or make him think of eating. When we were about to leave he discovered the paint easle... next time he wants to paint..that should be interesting.
Aunty Jessic, Uncle Colin & Aidan sent him a cool gift.. three balloons (Cars, Square-pants Sponge Bob & Get Well) and a magnetic Cars puzzle pack & coloring book. Such a good idea since the puzzle pieces stick to the box & don't get lost. He is having a lot of fun with it now.
Wednesday, November 30, 2011
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.
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.
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..
Thursday, May 19, 2011
We are idiots
We have always wondered a little bit about what a Fatty Filum is. If you recall, years ago, we went in for a tethered cord release on KP. After surgery, the neurosurgeon came back and said “the good news is that his cord was not tethered. He just had a fatty filum, so we got in there and cleaned that all up.” And that was all that was said about that. We figured that it may have ended up being an unnecessary surgery, but at least we were proactive.
I have searched for the term a couple of times since then, and never really got a lot of answers, so I just dismissed it. The problem was fixed, no need to really worry about it. Someone mentioned a tethered spinal cord on one of the boards I’m on, and it prompted that little feeling in the back of my head asking what IS a fatty filum?
After searching for it again, I finally got a clear definition including implications and wow. It just blew me away. You really should hear the tone of voice we use when we respond to doctors about that particular surgery “no, we thought he had a tethered cord but it turned out he just had a (?)fatty filum (?)”. That is just about the only part of KP’s medical condition that we have ever been unsure of or not understood completely, and we always just blow it off. I have always treated it like the neurosurgeon dealt with the fatty filum because he happened to be in there anyway, so he might as well do something. Doctors must think we’re idiots, because here is what I found today:
“The filum terminale is like a thin elastic band, about 8 inches long. At the top, it is formed from one of the layers of tissue surrounding your spinal cord, and extends from the bottom of your spinal cord to the tip of your tail bone. The outside of the "elastic band" has a few nerve fibres sticking to it.
The filum terminale works as an anchor for the spinal cord. For people with normal anatomy, the filum stretches when they bend over to allow the spinal cord to move up in the spinal column and then goes back to normal length when the person straightens up and gently pulls the spinal cord back to its normal position.
When the filum is fat-filled, fibrous and tight, it will not allow the spinal cord to move up and down within the spinal column, and so the spinal cord and the nerves end up being stretched instead of the filum. In most people this causes nerve damage".
Everybody has a filum terminale; it is a threadlike piece of tissue that connects the end of the spinal cord to the sacral end of the spinal canal in the pelvic area. In patients with a thickened filum (defined as more than 2 mm in diameter) [Yundt, 1997], the filum is shorter or lower-lying than normal and is thickened with fatty or fibrous tissue. This abnormality causes the filum to become relatively inelastic (a bit like a rope or cord, rather than an elastic band) and the spinal cord becomes tethered at an abnormally low level, thereby giving rise to the recognised signs and symptoms of a tethered spinal cord”
Yep. We are i-d-i-o-t-s. We are incredibly lucky and blessed idiots, but we’re still idiots. This doesn’t change KP’s outcome. This part of him got fixed and no complications are expected. It has just hit me that we didn’t just dodge a bullet, we dodged a big ole missile that we didn’t even know had been fired.
I have searched for the term a couple of times since then, and never really got a lot of answers, so I just dismissed it. The problem was fixed, no need to really worry about it. Someone mentioned a tethered spinal cord on one of the boards I’m on, and it prompted that little feeling in the back of my head asking what IS a fatty filum?
After searching for it again, I finally got a clear definition including implications and wow. It just blew me away. You really should hear the tone of voice we use when we respond to doctors about that particular surgery “no, we thought he had a tethered cord but it turned out he just had a (?)fatty filum (?)”. That is just about the only part of KP’s medical condition that we have ever been unsure of or not understood completely, and we always just blow it off. I have always treated it like the neurosurgeon dealt with the fatty filum because he happened to be in there anyway, so he might as well do something. Doctors must think we’re idiots, because here is what I found today:
“The filum terminale is like a thin elastic band, about 8 inches long. At the top, it is formed from one of the layers of tissue surrounding your spinal cord, and extends from the bottom of your spinal cord to the tip of your tail bone. The outside of the "elastic band" has a few nerve fibres sticking to it.
The filum terminale works as an anchor for the spinal cord. For people with normal anatomy, the filum stretches when they bend over to allow the spinal cord to move up in the spinal column and then goes back to normal length when the person straightens up and gently pulls the spinal cord back to its normal position.
When the filum is fat-filled, fibrous and tight, it will not allow the spinal cord to move up and down within the spinal column, and so the spinal cord and the nerves end up being stretched instead of the filum. In most people this causes nerve damage".
Everybody has a filum terminale; it is a threadlike piece of tissue that connects the end of the spinal cord to the sacral end of the spinal canal in the pelvic area. In patients with a thickened filum (defined as more than 2 mm in diameter) [Yundt, 1997], the filum is shorter or lower-lying than normal and is thickened with fatty or fibrous tissue. This abnormality causes the filum to become relatively inelastic (a bit like a rope or cord, rather than an elastic band) and the spinal cord becomes tethered at an abnormally low level, thereby giving rise to the recognised signs and symptoms of a tethered spinal cord”
Yep. We are i-d-i-o-t-s. We are incredibly lucky and blessed idiots, but we’re still idiots. This doesn’t change KP’s outcome. This part of him got fixed and no complications are expected. It has just hit me that we didn’t just dodge a bullet, we dodged a big ole missile that we didn’t even know had been fired.
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