Thursday June 29, 2017 I traveled back to New Orleans to get my testing done for my bladder augmentation. We left about 330 in the morning and got there around 730. They got me out of my chair and into a hospital bed it got me ready for day surgery but I wasn't actually having surgery they were just doing a urodynamic study with the scope so it was considered a surgery. After like 30 minutes of sitting in the hospital when we finally got back to the OR which was really weird and very very cold. I don't remember much from other ORs that I have Bennion besides a blank room and this was the complete opposite there was stuff including cabinets in machines everywhere. Me in the OR nurse got along very well and was talking while we were waiting for the doctor to come in and start the procedure because he wanted to be in charge of everything.They took out my catheter and was going to put in the catheter that would fill my bladder up with water but was having trouble getting it back in because my bladder was pressured up. She ended up having to call in another doctor to help with the Catherine and after 10 minutes of trying they finally got it. It's finally about an hour after I got back to the OR the doctor came back and started the procedure. Once my bladder reached 150 mL of fluid I started leaking. This is a teaching hospital so of course they were interns and residents watching. It's a good thing that I'm not shy anymore because I have two other man staring at my vagina. The doctor stuck his finger up into my urethra trying to make my bladder hold all of the urine that it could but my blood pressure did not allow that for very long. I got to watch everything my bladder was doing on the monitor which was really cool.
After 10 minutes of the urodynamic study he called it quits and decided to do the scope. I also got to watch as the scope went into my bladder and stuff. I was expecting my bladder to be very red and inflamed but it was not, it was very pink and look pretty healthy in my opinion. After looking at a few things he pulled the scope out and gave me what his opinion is wire. Basically my bladder is not functioning and neither is my urethra. He believes that a surpubic catheter would've most likely destroyed me. I have two options either stoma or urostomy bag.
He believes that a bag would be easier but there's stuff about the bag that I just don't like. There's a smell, I couldn't change the bag by myself, there would be a constant bag attached to my belly, we couldn't pull my pants up all the way. Of course there are other concerns with the other procedure but I think I could handle that one better than I could do urostomy. I go back to the doctor for my preop July 18. I'll also be getting the MACE procedure for my bowels!!
I plan on putting this in a video plus I also plan on writing up a blog post about both options so everyone can see the things I'm looking at.

I received a call from the people in Houston Texas that will be doing the rest of my driving evaluation to get me fitted for the equipment I will need to be able to drive. They no longer require me to have a permit before I am able to make the appointment. They understand that I am not in Texas and there are different laws in different states. So all I have to do is fill out the paperwork that I received in my email this morning and get the few people in Lafayette to send them a fax of the initial evaluation. After I get everything done all I have to do is make an appointment. The referral that I sent them last year is good until August so I have hoping that I can get everything done with the bladder augmentation stuff done get this over with. I will have to be trained in the equipment before I am able to actually get on the road with it but I'm hoping I will have everything done by next summer. This gold will be moved onto next year as well but I am one step closer now that I know I don't have to go to the hassle of trying to get a permit before I am able to be fitted with my equipment.

Sunday morning my brand new wheelchair which I received in January started acting weird and some of the functions would not operate correctly. After a few minutes the whole chair completely stopped working on me. I ended up having to get in my old chair which is way too big for me now. Today the guy that works on my will chair came by and looked at it. He ended up having to take it back to his workshop to try to figure out what's wrong with it. He is thinking it is water damage and if that is the cause of what's making it not work it is not covered under the warranty. If it is not covered under the warranty that means I will be responsible for paying whatever it takes to get it working again. I honestly cannot afford another big expense! So please keep my wheelchair in his prayers that it is something other than water damage that way the warranty will cover whatever it takes to get it back on the road.

I go back to New Orleans tomorrow morning to get some more test on my bladder to figure out exactly what's going on so that we can move forward with my bladder augmentation. We have to leave about 3:30 in the morning so I have to be up by at least 2:50 am. I am not looking forward to the drive up there which is four hours but I am ready to get this bladder augmentation finish completely.

Monday morning at about ten thirty Brantyn, Madilyn, Jessica and I headed out to pick up Ms. Kay in Jonesville. I had an doctor appointment Tuesday morning right outside of New Orleans so decided that it would be better to go the day before and stay the night. That way we wouldn't have to get up so early and make the four hour drive there to make it by 7:30 am. We'd make it a mini vacation. We found a Best Western that had a pool with a handicap lift so I could go swimming. It would at least be a good way to get out of the house and our normal routine. The trip down there wasn't so bad because both kids slept at least part of the way down there. We got to Best Western at about 3:30pm. We were all so ready to get out of the van. I was most ready because I was freezing with the air conditioner on and it was 91 degrees outside.
Jessica loaded up the dolly with all of our things and we headed to the fourth floor. We came to our room 427, a handicap room with a handicap shower and there's only one bed! It would be Jessica, Ms. Kay, Madilyn and Brantyn trying to sleep on this queen size bed. Needless to say we called down and got the hotel staff to bring one of those fold up cots for Ms. Kay to sleep on. Jessica, Brantyn and I went to scope out the pool and the lift. Downstairs we go! When we get to the pool it's not very big but sure enough it has a lift. The manager, wearing a suit in the 91 degree heat, is having the maintenance man work on getting the lift ready to go. They have a little trouble at first and say he'd call when the lift was ready to go. (Ended up missing a piece and it was a simple fix). So we headed up to our room to change everybody and get the other two who stayed in the room waiting for the cot to be delivered.

We headed back down to the pool once everybody got changed and they were almost done with the lift. The guys even helped Jessica get me on the lift! The manager held my hand so I didn't fall over while the lift was moving and away I went into the water. It was cold at first but with the warm air and the sun in the sky above us it wasn't too bad. I brought a big noodle thinking I would be able to just hold the noodle and float like a normal person. No! My butt and my legs want to float! So I had to have someone push my legs down in the water so I could sit up. We ended up strapping me to the chair because I got uncomfortable after a while. The sun started to fade behind the wall around the pool and the wind picked up. Guess who got cold! Me! So out the pool I get and sit in the sun drying off and trying to get warm again. After about an hour we went inside, I of course am still cold, and let me tell you the air conditioner so didn't help being cold.
We went up to the fourth floor patio to sit down for a while before getting a shower and ordering pizza. It was nice, a little windy but much better than inside! Madi played on the ground for a bit as we looked up pizza places that delivered and discussed what everybody wanted on the pizza. After ordering from Dominos we went back to our room and everyone got out of their wet clothes and got a shower. I was to cold to get in the nice warm water only to get out in the cold again so I skipped out on my shower. Just about the time Jessica gets me laid out to change my clothes and put another catheter in the pizza deliveryman shows up and knocks on the door. So I have to sit all the way back up just so they can open the door and get pizza. After getting me back dressed and halfway warm again we go back out to the patio to eat our pizza and pasta. I swear to you guys that was the best pizza I have ever had! Now with our bellys all full of pizza we go back to our room to start settling down for the night and eat our lava cakes.
I ended up passing out by like 9:30pm or so. Guess what! I woke up at 1:30 am and couldn't go back to sleep. So I played games on my phone, surfed the internet and done anything I could think of to keep me entertained. I woke everyone up about 5:30 AM so we could start getting dressed and go eat breakfast before I had to be at the doctor at 7:30. We got everybody dressed and running by 6:30. We would have to kind of hurry up and get breakfast down so that we wouldn't be late. They had a very good breakfast buffet however it was not complementary so we had to pay for it. By this time is already like 7:18 and we still have to go back to the room and load up the dolly and load the van back up. Needless to say we were going to be late but thank God my appointment wasn't until 8 o'clock we just had to be there early to fill out paperwork. We got the van loaded up and put in the GPS address to the LSU network that we were going to and thank God it was only like 2 miles down the road. We got there a little late. The receptionist was very rude and was talking to us like we wasn't even there so I will be reporting her. We got back into the back very quickly and saw the doctor. Unfortunately we did not have the hardcopies of my CAT scan and urodynamic study so he could only go on the results but decided he wanted me to come back and get a whole other mess of test done to find out exactly what is wrong with my bladder and urethra before deciding exactly how to proceed. The procedure that I am wanting is an all day procedure. He was a lot nicer than the last guy we went to in Tulane University and hopefully we can figure out exactly what needs to be done in order to fix my bladder and get rid of this awful catheter bag.
So we got back on the road and headed home. This time the trip was horrible! Brantyn was wining about everything. We stopped and had Chinese food for lunch in Natches before coming on home and dropping Ms. Kay off in the Jonesville nursing home parking lot where she had left her car. We didn't get home until 3 pm. After we got home the doctors called and put me down for the tests on June 29, 2017. It's all getting done pretty fast which is something that I really like. I'm hoping I can have this procedure done or whatever procedure that's going to be done by the end of this year. I have to go and give a urine sample Wednesday morning at the hospital for the doctor as well.

I'm sorry that I have not been blogging here lately but things have been a little bit crazy. I ended up having to go a week without Foley catheter because my pharmacy could not get them in stock. After eight years I have developed a latex allergy. I normally can go a day or two with a latex catheter before I started seeing allergic reactions but this time I can only go a few minutes. So my skin on my bottoms is starting to want to get red and irritated. Now that I finally have a catheter is starting to be normal again thank goodness. I'm continuing to work on my school work. I'm currently waiting on my supplies before I can get started on my next unit.
Have to go tomorrow for my first baclofen pump refill which will be very interesting because I'm not sure exactly how they're going to refill my baclofen pump. I also have to go into the oral surgeon tomorrow to get to number four removed. It has grown into the middle of my mouth because of my wisdom teeth pushing it. I will eventually have to get my wisdom teeth cut out as well but he's only wanting to do this one for right now. I totally not looking forward to it at all that I know it is going to hurt when I wake up. I go to New Orleans Monday night and stayed the night so I can get out Tuesday morning and get it to another doctor about getting my bladder augmentation done. Let's hope that it is good news!