Friday, August 31, 2012

Overdue Recap of the Week

Boy I wasn't fibbing when I said there was ALOT of work to do once we were home.  It's taken the whole week, but I think I'm finally all caught up.  I really don't want to say that too loud or something else will pop up that I forget to do, reschedule, have done, etc.  It's one thing to be gone when extended hospital stays are "planned", but in emergency situations it really hurts the schedule and  the home front.  I swear if I don't push for home the medical staff forgets I DO have a life away from the hospital, lol and it's in need of attention so When I start to see this face return its time to bust out of there :)
 We were discharged on Friday the 24th.  Not only a great day just to be discharged from this visit but it's also the 3yr discharge anniversary from our extended stay with the crash of '09.  Danny and I were able go home after a 79days of being in the hospital, It would the first time our family was together and living in the dream home we built.  Aug 24th also is an important date as we started private duty nursing in the home, it's a date to remember :)
Look at this amazing sunset I was able to capture as we pulled off the highway down the road from our home :)  Beautiful!!
Once home I went into clean mode right away.  Throwing away anything that he used or touched before we left.  They still don't know why or what triggered this event and I was doing everything I could to prevent it happening again.  I had no nursing the night we got home, so I can tell you when my head finally hit the bed I WAS OUT!
I call this picture Danny Ala Cart!
Danny and Puff are the best of BFF's.  I'm alil bummed about it mostly because I don't have a great flow as of yet with Danny being hooked up to all these tubes ALL THE TIME.  Not only is he on Puff, but he is now on a Continuous feed with constant GTube venting 24/7 also.  Let me tell you we have gotten pretty creative with all the tubes so it all works like it's suppose to.  There has been some hiccups along the way, with feeding the bed, having the syringe tip over with all the residual in it, tipping over the water chamber and sucking water up all of Puff's hoses and giving him a shower well.......that might take awhile.  It's circus around here, but everyday I believe we are getting better at.  I'm sure Danny is watching us just rolling his eyes as we try to find a productive flow.....I do think he enjoys all the "extra" attention hes getting now though.  Once we "know" what we are doing I hope the awkwardness will subside.  Danny himself has improved greatly.  We went to visit Dr Kasper on Wednesday afternoon and ALL his labs came back NORMAL~ platelets, CO2, hemoglobin, everything......We fixed him :)  Well kindda ~ Danny still remains on Puff 24/7 and with how he reacts trying to take him off Puff, I don't really see an end in sight.  I LOVE LOVE LOVE how Puff helps Danny now.  Danny is more awake, more alert, breathing SO MUCH better.  Even more then he did, before this health scare, when he was on Puff.  The settings were changed to take deeper breathes and Danny really likes that.  As long as I see Puff n Danny playing nice together I can deal my issues with Puff and Puff can stay. 
Here's my Science experiment ~
This is what happens when I don't show anyone how to clean the pool.  I should have just called the pool company to come out and maintain the pool while I was gone, but quite honestly I didn't even think about it, till I saw this.  UGH!!  I've been diligent with cleaning, shocking, and back washing it pretty much everyday.  As of day it's looking ALOT better.  I'm just glad the pool is only going to be open a few more weeks and then we'll drain the whole thing so next year when we start it up for the season we'll have it power washed, sand in the filter replaced and brand new water.  Start a Fresh!!  I've had issues with the pool ALL season long and it needs a redo.
Avrianna has had many "news" this week.  She's learned how to do laundry from start to finish and I taught her how to mow the lawn with the BIG John Deer.  She is LOVING it......for now.  I'm sure it will be like every other chore where I'm dragging her to do it, but for now she asking me everyday if the lawn needs to be mowed.  WOW ~ my baby is "driving" and she's really good at it :)

After trying to grow her hair out for a long while.....Avrianna comes to me on Sunday and asks for a hair cut. And she wanted it short.  
Before~


After ~ Isn't it cute!!
Then the next day she decides that she wants the front even shorter.....
SO~

I think it's even cuter then the first cut :)
Yesterday Avrianna and I went to her school for an Open House, to meet n greet her new teacher and drop off all her supplies.  Avrianna is very excited to be a BIG 5th grader, her last year in elementary, and she feels more comfortable now that she's met her teacher.  I hope for a great year for her!!  Today I stopped in to Danny's school and registered him for this year, WOW a 3rd grader!  I got to talk with Danny's principle while there and I've already got the bug in her ear that I am going to be requesting an early IEP and change things around this year :)
I had to go in for surgery yesterday to have more of the area cut out where the Derm Doc removed a mole that came back A typical.  Holy cow do I have a LARGE incision for just a mole.  The location is one that could have been located better.  In my arm pit and the incision darn near goes right across the whole thing.  Man it hurts! It's bruised n swollen,  And every time I move my arm, it lets me know its there.  I have 2 weeks with stitches aka supposed weight restrictions and needless to say, I haven't been really good at following it.  I need to work on my listening skills more, lol.
On the MS front I'm pretty excited......I have found a APNP locally at NeuroScience that is willing to be part of my "Team".  I can't believe it!!  Everything isn't totally finalized as of yet, but the APNP will follow me locally through the year and I will still be able to see the Neurologist in Milwaukee.  I am getting the best of both worlds here!!  I don't want to jump for joy yet, but if this pans out I will be able to do my monthly infusions here locally and if I have a relapse where I need steroid infusions I can do those locally too.  How great is that to be taken care of locally under the direction/care of the head of the MS clinic from Milwaukee, who by the way to FANTASTIC.  I'm hopeful that things will work out.  The APNP I've been in contact via email has gone out of her way to help me out and she isn't even following me yet.  Woot Woot!!  Man I hope this comes together as it would be one less hurdle I would have to jump over with this MS crap.  When I'm doing good it's no problem to go to Milwaukee for follow up, but when I'm down in out.....honestly it's hard enough to just get out of bed some days.
Please take moment to remember Danny's dear BFF in heaven, Mattman.  He will forever be in our hearts and always in our minds.  Today he's 6 yrs old and I'm sure he's partying it up in Heaven today.  And on 9-6 will mark his 1st anniversary of going to Heaven.  Love you Mr RottenPants!!
With his awesome Momma Heather!
BFF's ~ watch out they were double TROUBLE!


I was happy I was home from the hospital and able to make my Grandfather's surprise 80th birthday party.  It was a great time ~ and for the first time.......I think ever the man was speechless, lol.  Happy Birthday Grandpa Kohl
Grandpa and his grandbabies :)
I was able to snatch a once in a blue moon picture of my sister n her family too :)

1 comment:

Justin and Victoria Nelson said...

Hey Lori,
You always continue to inspire and amaze me. You and your whole family.
I was just looking at Danny a la carte, and was wondering if the medical supply company could at least offer you a stand for the vent?
If you do have one, forget my question. But I just thought I would throw it out there.
Thinking of you...