Wednesday, August 15, 2012

OG&E Lineman's Expo....

On Friday, August 3 we met my nephews who were going with us at 4pm we arrived in our motel at 8:30pm.  We stopped to eat at McDonald's on the turnpike and shortly thereafter due to wild fires they shut down the turnpike.  It was hot, dry and fires everywhere.  We got to swim around at the pool, the boys had fun actually I think they were the entertainment they cracked me up.  We got up the next morning, headed out there so I could work snow-cones with my bestie, Kelly.  The boys played, Jeremy had a blast and I got off working at 9:30am.  We walked around, visited we then ate the best burgers, the boys ate some corn and we were loaded up and on the road home by 11am.  It was neat to hear the boys talk about everything they had done, what they liked to hear Jeremy jabber up a storm and then we hit the turnpike and I think the boys all passed out, by the time we got to Wellston they were all asleep with the exception of Jeremy who was fighting it around Stroud he decided that was enough silence and woke them all up.  Jeremy had so much fun with the boys, he talked, laughed and constantly was saying his, "I sad, sad, wats, wats up with tat".

Here are some pictures.....
Jeremy with Joseph 

Wee down the slide

Me and Reddy Killowatt

Tuesday, August 7, 2012

The Uneventful weekend.... Ha ha

We decided that Jeremy wasn't emptying his bladder enough so we would install a Foley Catheter at night.  We are trying to figure out what works best to prevent all the Urinary Tract Infections (UTI's).  If his bladder was empty there would be nothing for the bacteria to dwell on.  My goal is to get him off of the maintenance antibiotics.  It's no big deal to install one, the nurse would do it before she left and I would remove first thing in the morning.  It was simple to remove, deflate the little balloon and it slides out.  It was working well.  

I had made arrangements to have lunch and see a movie with a friend who has a child with special needs.  We have been friends for years and it's always good to pick her brain since her child is older.  It was a nice morning, good time at the movie and then Ted's for a wonderful, delicious lunch.  I came home and Jeremy and I took a wonderful nap.  You have to remember I reside in Jeremy world..... so we don't necessarily understand the word normal.....

It was time to install the Foley Cather and irrigate his bladder, process was done easily like it had been done all that week.  Jeremy decided it didn't belong and pulled the tube.  We didn't think he pulled it to hard, there was a little pink in the bag but the normal saline didn't drain out, so I removed it thinking it was possibly clogged, flushed it out with no problem but there was blood in the tube.  We removed the Cather and Jeremy started bleeding profusely and it wouldn't stop.  I put a diaper on him, loaded him up and rushed him to St. Francis Pediatric ER.  I was an emotional wreck, I haven't had this type of situation with Jeremy at home.  My wonderful home health nurse stayed and cleaned up all the blood on the floor. I've been extremely blessed with awesome nurses.  The security guard was super nice, parked my car for me, check in was awesome.  Then we get Mr. I want to re-diagnose your child "Resident", a nurse who treated me like I a mom from Mars and ER doctor did exactly what an Urologist who has never seen my son said with no questions.  I wasn't happy.  They installed another Foley, antibiotics for 10 days and you are ready to go home.  There is no urine in the bag and the nurse informed me he was probably empty.  I told her, "no we installed 120 ml of normal saline before we left it's still in there, and I'm not leaving to only get home and him start peeing blood and end up driving back over here".  The doctor came back in and  I told her the same thing.  It took J about 30 minutes before he started to pee and it was red, I kept emptying it into the container and it finally started to have less red.  The nurse and doctor came in and said, "wow that's lot"  I wanted to say, "Yea he must be empty"  but I was nice.  We got home about 1am, gave J his meds and we passed out.  Home health nurse came in the next morning and I was so glad to have them familiar eyes on J.  I talked to Dr. Oren Miller, he wanted the Foley left in for 10 days, allow him to heal and then we would come up with a new game plan.  I took him in to see Dr. Cyrus so he could put eyes on him.  We left the Foley in, Jeremy did well until that Sunday, he started to tug on it so we had to watch him super close.  It was removed with ease and trauma seems to have healed.

My work with the Oklahoma Family Network, gives me assess to specialist and by specialist I mean moms who deal with what I deal with.  I am fortunate to have a PICU nurse who also has to catheterize her daughter so I was up visiting families and sit down with her, she gave me awesome advice.  We came up with a new plan we will Cathe Jeremy 5 times a day, first thing in the morning with irrigation, around noon, around 3-4 with irrigation, right before bed, and then I get up at 1:30am to catheterize him.  It's been almost 2 weeks and it's working fairly well.  He gets off the antibiotics on Monday and that will be the catcher if he remains free of UTI's.

Jeremy got botox, did very well with the procedure always does and makes a huge difference in his stiffness. Yesterday staff took him for a walk, and he walked back home with his walker.  Super amazing boy....

God has blessed me with many families who I get to help along their journey but also help me along my journey, he's also blessed me with some great doctors for Jeremy who do value my input as mom and recognize me as an expert.....

Thursday, August 2, 2012

Vacation 2012...

I realize I haven’t posted in almost a month, it’s been a crazy time but I’ll post about that later but now for our vacation.    
We left our home on Wednesday, July 11 for vacation 2012.  We arrived safety at our first destination of Osage Beach with my sister and 2 nieces.  J was super excited to have a few traveling companions to entertain him and made the trip fun.  We went swimming, and then hit the outlet mall.  
Miranda @ breakfast
The Traveling Crew....
 We got up the next morning to head to Columbia, home of Mizzou to see our Super-hero, Dr. Dan and all the amazing people at the University of Missouri Children’s Hospital.   We ate at White Castle, because one of my brother in law love that place, then we made a stop at Buck’s Ice-Cream for some Tiger Stripe ice-cream, super yummy and to take a pint to Holly.  We had a great visit, nothing has changed and we continue to monitor.  I was so glad that J walked in the walker for Dr. Dan because so many times he won’t and the look on Dr. Dan’s face was priceless.  I should have taken a picture.  Dr. Dan  was quite impressed with Jeremy’s progress and Mike who makes J’s back brace got there just in time to see J walk.  Once again J amazes Dr. Dan with determination and progress.  I was sad that I didn’t get to meet Dr. Kuhns, he assisted Dr. Dan with J’s surgery.  I’ve not met him and he’s not seen J since surgery and I wanted him to see how well he was doing.  We then went to visit the children’s hospital where J was the center of attention with Lauren, Corrine.  We didn’t get to see Shelley, she wasn’t working and then Michelle the night nurse wasn’t working and she hasn’t seen J since he was discharged.  Lauren took us up to the PICU, where J got to visit with Steph and Liz, Elizabeth wasn’t there.  We went to check into the motel decided we were going to eat Mexican and found an awesome Mexican restaurant that night.  J was getting very tired at that point and started to feel warm, we went back to the room to rest while the girls went swimming.

J stole Candy's surgery cap

Lora, Miranda and Jeanna
University of Missouri 

J with TJ @ children's hospital 

We got up the next morning and continued our descent into Kansas City for Lego Land, we got there had fun, played, J crawled all over the place, the girls and I sang, YMCA karaoke that was fun and no one threw anything at us.  We then got to meet up with one of J’s FG brothers, Ean from Iowa.  Jennifer and I have talked on email, text and facebook it was 4 hours to KC for them and 4 hours for us so it was a nice ½ way point with lots to do.  It was nice to visit with Jenn and see Ean and Jeremy interact and ask questions.  We then went to check into the motel, went to McDonald’s to get dinner, went swimming the pool was super cold but KC had gotten rain that day.

J w/ mom and Ean w/ Jenn

J's favorite

Us singing YMCA 
Wizard of Oz- built out of Legos

Downtown KC built of legos

Thumps up he's coming out 

KC Chiefs stadium

We then crashed, got up the next morning went to Sea Life Aquarium, went to Crown Center Plaza to the free dinosaur exhibit, then walked around and visited all he neat stores, ate lunch at 3 Little Pigs, was wonderful, awesome, BBQ.  Then we had quit a exciting trip to see the KC Royal and the KC Chief stadium, my sister got a few pictures but really wanted one of the football helmet, we started to wonder did we dream we saw the football helmet because we drove many, different miles, up and down hills to get that picture and never found it.  We decided on pizza for dinner, back to the motel to swim and Jeremy at that point was so beyond exhausted.  We got up the next morning and made the 4 hour trip back to Oklahoma, my sister drove so it was nice that I got to sit and enjoy the trip.   Jeremy was super glad to be home, we were both exhausted.  I took the next day off to sleep in, catch laundry up and recover…..

J and Jeanna looking down at fish

Lora w/ Miranda dinosaur exhibit

J crawling around aquarium 
It looks like it's smiling at us

To touch a star-fish

My sister w/ the girls 

Small shark 

KC Royals stadium 

KC Chiefs stadium 

I work for OG&E so another power company