Sunday, August 11, 2019

Didn't Go as planned

The summer for The Osero's went pretty different then we had planned.....the winds of change had blown in. We've been making the best of what's being thrown at us.
Av's senior photos were done by the ever so talented Tara Rudy in Oshkosh, click HERE to get to her website.  I can't believe I just said senior ..... how is that even possible? Time just won't slow down....I'm NOT READY!  I'm just in AWE of the pics!  I still don't have all the pics back from being done but here's the previews that I do have.
How did she get so mature?
When did she grow up?
Isn't she lovely?!
Before N After with the Makeup n Hair Artist
 SO many great photos I found it hard to pic......so I got MOST of them being printed out on canvas'!  Now to find a wall (or as Av stated more like a shrine) to put them all on.
Tara doing what it takes to get THE perfect shot!
Now I have to sit and wait to get the canvas' to hang up.....every photo is just stunning, BUT I may be alil partial.  We are waiting to have family pictures done this fall with Tara too.  I can't wait to see what she can do with Danny. I've been saying if anyone can capture "Danny" Tara is going to be the one to do it.  If you're looking for an amazing experience give her a call you WON'T be sorry, she's a beautiful person inside and out ~ Tell her The Osero's sent ya!  We had plans to have photos done in July BUT medical issues had us have to cancel (I'll get into that soon).

Av has had a busy summer hanging out with friends (she is no longer in her relationship but they are still friends), working at the NHS pool as a lifeguard and swim instructor, dive practice and going to the gym.  I can't believe in two more days her Senior Dive season will start ~ oh what will this year bring?
 CUSA 2019
Tubing
Av and I went to see a Pentatonix concert in Green Bay ~ we had a great time!!
This summer Av has been a big help driving me around to have procedures done (4 surgeries so far this summer for me) and appts as MS came out to play mid June and I've been trying to kick it's ass since. Unfortunately we had to once again (4th time) cancel our DC/NY trip over the fourth of July as I started Plasmapherisis on July 1st.  The first round was 5 treatments every other day and now I do it once a week.  I guess there is something in DC/NY that we are not suppose to see ...... some day .... maybe. July 1st instead of leaving on our vacation, I had this new accessory called a perma cath inserted in my chest.  It's a HEAVY duty double lumin catheter that sits in the heart and it can handle the volume and speed needed to do the plasma exchange.
In the Morning the permacath was put in and a few hours later.....1st plasma exchange 
 Red side line is how my blood is taken out, it then goes thru a machine to spin out my plasma and new plasma is mixed back with my blood, and the blue line is where my blood is returned to me.  Whole process takes about 1.5 hours.
 The machine

When the permacath was put in the Doctor realized that the catheter to my med port which is in the other side of my chest was too far into my heart.  Maybe that's why I've had issues with it since the beginning .... it's in the wrong spot.  So I called the surgeon that put it in and they scheduled me to have a port revision.....back to the OR I go. For only 15 mins and when I woke up I found out the ONLY thing he did was a Xray and he felt is was in the right spot so nothing was done.  In the mean time it was decided that I will be doing the Plasmapheresis ongoing and I was to look at getting a AVF/Arteriovenous fistula (attaching my artery to my vein) in my arm so I could get the perma cath out as it's a higher risk for infection.  The perma cath means I can't get wet so swimming has been OUT this summer and showering is more challenging as I'm not suppose to get my chest wet so I have to cover it up with press n seal and tape.  During the consult with the new surgeon (as I wasn't going back to the first one after all the nonsense with the med port) I discussed with him the med port issues I was having and he stated he'd take care of that for me during the fistula procedure.  Well two days before the surgery the doctor called me, I've found it's really never a good thing when a doctor calls on a weekend personally himself.  He stated he looked into the med port issues alil more and found not only IS the catheter in the WRONG spot it was threaded in the WRONG vein.  They like it to be in the vein draining from the neck and it was in the vein draining my arm....which is problematic for the fistula to be done in that arm so I had to go in for surgery to finally have the med port done properly first (remember about a week before this I was put under to fix this and that surgeon didn't do a damn thing), wait 48hours and go back in for another surgery to have the fistula done. Spectacular!! 
Thinner catheter bent to the right is pretty obvious that its in the incorrect place as it shouldn't be anything longer then the thicker permacath.
New port xray showing the thinner cath along the the thicker permacath and now in the correct place.

 Boy was I surprised how painful the fistula surgery was.....plus I need to go in for another surgery the second week of September to have the fistula brought closer to the surface.  Unfortunately I really do have some crappy veins as once the surgeon got in there the only good vein he found was pretty deep in my arm and located near a cluster of nerves.  Maybe that's why it hurt so damn bad, I can handle a lot but this one required me to go to the ER for bigger drugs and nausea meds.  The surgery is going to be more extensive in September and I'm not going to lie the anxiety on this one is HIGH.  The surgeon will be going in by making an incision pretty much along my whole bicep this time, raising the fistula, lowering the nerves, sewing down the muscles and laying the fistula on top so it's easier to access.  Once the fistula can be used, it takes 6-8 weeks for it to mature enough to handle the bigger gauge needles, volume and speed the blood needs to run at then the permacath can come out. Finally everything will be under the skin and I can get swim and shower.

 These outfits are starting to become a normal for me
 New Port
 Driving Ms Daisy around once again :)
 Doesn't look this attractive ~ NOT the summer bod I was going for this year.
 New port accessed for Fistula.....unfortunately this one too isn't drawing blood back, BUT the theory is it's not drawing back due to the swelling and the large permacath running along side the med port cath.  Time will tell I guess.....deflating non the less.
 Fistula site ~ My hand feels weird now that the blood flow has been rerouted but I was told that will improve once my body figures it all out.  The site is feeling better now .... it's 1.5 weeks out but my forearm is pretty painful with nerve pain.  I'm hoping that improves or can be fixed with the next surgery.  It's ALWAYS something.....fix one thing and another goes to crap!
 The Bruising and swelling is ridiculous so I can only imagine what the bigger surgery in September is going to look and feel like.... Can't wait!
At least the treatments of Plasma once a week and IV steroids once a month are helping as my legs n feet have almost all the feeling back and my spasming bladder is better (fun times I tell ya!!) so I guess all this medical drama wasn't done for nothing. 

Dan and I have been together now for 20yrs.....Our first date was in Aug '99 we went to Dairy Queen for Ice cream, mini golfing and then to a bar in Oshkosh to watch a fellow co worker sing.  We met at our workplace a Dealership in Oshkosh....I was a service writer and he a mechanic.  To say we had few difference in opinions is an understatement....we didn't get along very well, but we grew on each other and the rest is history.
We took a ride over to Two Rivers (about an hour away) for ice cream.  Yeap just for ice cream!!  I was worth the ride....as the weather was gorgeous for a ride in a convertible and the ice cream was amazing.  The place is called Scream 'N Conuts......the cones are donuts, so good!  Give it a try if you're in the area or need a place to go for a ride.
Just like my bad luck with health this summer unfortunately Dan's bad luck was his lack of racing this year.  He had all intentions of running it hard this year, but BOTH cars have been held up longer then they should have at other shops.  So no fault of his own he has sat this year out.  Fortunately more one on one time out and more help around the house for me. 
We ended up doing more landscaping this year.  Seeing we had more time around the house then we had planned this year.  We took out the overgrown and dying cedar trees and put in more flowers and flowering trees.
I just love sitting outside and seeing all the butterflies now.
This summer has been WET!  Lot's of crazy wicked storms. They say lightening doesn't hit the same spot twice.....well I need to buy a lottery ticket then as on July 4th our house was once again hit by lightening.  Thankfully this time there was no fire and we kept our electricity (many in the area were without for days).  It did manage to take out the control panels for the irrigation system, well pump, security cameras (with some cameras) and some of our home stereo equipment.  I am forever grateful that Av didn't get hurt as she had JUST stepped out of the shower when the strike hit.  Knowing the bolt traveled throughout the water supply by blowing out the control panel (melted wires and black soot all over) she could have very well been electrocuted.  Guess the wise old parents and grandparents were right.....no showering during an electric storm. The house is pretty much all put back together and I can only hope we will not have to deal with any more lightening strikes
The weather makes for some beautiful skies at nite
This poor apple tree just doesn't want to stay standing up when the high winds whip thru
On one of our joy rides we were trying to beat the wicked storm that was fast approaching.
 
Well Dan pulled a good one on me and I had no clue he was up to no good!  I was surprised with a new convertible.  I LOVE my old Cobra but it's manual with a very stiff clutch and I didn't have the leg strength to drive it any longer.  SO...... a newer Mustang with automatic is now my ride!!  Yes we have both still until we figure out what we want to do with the Cobra
Av videotaped the surprise.....we were "dropping" some paperwork off at the fire station but this happened instead.  (side note ..... I just had surgery the day before so they were razing me about pain pills)


More ink therapy for ME..... All my work is done by Jake at Neenah Electric Tattoo.  He's amazing!
LOVE
My puppy prints.....just have to outline Bailey's original print so it's not so hidden
My rose is blue once again.....the blue had turned more black looking through the years.  LOVE IT NOW!

All dressed up and somewhere to GO. It was only 4 days after my last surgery but I wasn't about to miss this event.... My Niece Whitney got married!!!!
It was an outdoor wedding and the temps were crazy hot and storms were due to come in so this guy stayed home in the air conditioning and shelter
Av and my nephew Tyler..... all grown up
The temps were HOT but the sun shined during the ceremony.  The rain finally showed up when all the festivities were inside during the reception. 
Whitney and I with a picture of her other sponsor who had passed away
Me and my Dad
Me, my mom. and my sister
Love her!

Yes we like our ice cream!!! A new place opened up in Appleton this week called Wonder Ice.  They have over 40 different options of rolled ice cream.  It's definitely one of our new favorites.
Going to miss this girl on the left.... she's been one of Av's best friends since 2nd grade.  Good luck with your new endeavors in the Air Force Grace!!
He couldn't handle the ice cream outing and passed out in his sling, LOL
We liked it so much so that we went back the second day!  He wasn't a fan of my flavor choice this time of coffee so lucky his nurse and sister shared theirs with him.
My Fourth of July babes!  Instead of sitting in NY on top of the One Observatory Building on the 101th floor to watch the Macy fireworks show live.......we once again watched it on tv.  Wow what a show it was!!

This character is doing awesome!!  I've been blessed that he hasn't had any real major issues this summer seeing I've had all I can do to keep myself in check.  Danny was to have his baclofen pump replaced the end of July (hence why we had to cancel family pics) but no fault of our own that got cancelled as they doctors office didn't have the paperwork submitted in time.  To say I was upset .... well that's an understatement as I had to pull out all the cards to get things aligned in time to have it all done and around my medical drama and it to be cancelled.  We have it rescheduled the end of August but there is NO ROOM for error now as the battery life is showing it to be done very soon and the meds need to be refilled.  IT has to be done, there is no putting it off any longer.   We tested Danny to see if he was still immune to MMR as he was vaccinated when he was younger but much to our surprise we was not and he needed to have a booster.

County fair time!!
visiting Dad when he works at the grandstands for the tractor pulls
We are very sad to report that we are losing a wonderful nurse.  She will be following new adventures out of state.  Thankfully I had been in contact with a nurse that I interviewed a while back and she available and still interested in working with Danny.  The fastest I've ever been able to replace a nurse.  Send a prayer that the transition for everyone goes smoothly.  Best wishes Ms Angie we will miss you SO VERY MUCH!

1 comment:

Anonymous said...

Av is soooooooooo beautiful!
Best of luck with your health issues.