Tuesday, May 26, 2015

Even though we were discharged from the hospital, things for Danny have been far from smooth sailing for him.  Thankfully we haven't seen much of these episodes he was having but he has been having some significant discomfort. He was seen by Dr K last week to see if we can get on top of what was going on, but all the tests, labs, and X-rays didn't show anything other then a bunch of air in his intestines. Darn!!  A few days later he started to have some excessive BM and more discomfort.  I ran a sample over to the clinic and the next day I got a call that he tested positive for another C Diff infection. Shit - Literally!  Danny started on an antibiotic that will last for 10 days in hopes to knock the infection out. I've seen his eyes more and even a few smiles :). So I'm hoping to continue to see improvement with him.
The school year is coming to close for Ms Av in 7th grade. I can't believe she'll be in 8th grade next year. WOW!  I'm So proud of her and dedication to education. Another straight A year for her so Bring on 8th grade!!  For Memorial Day she marched in the parade for the first time in Band. They sounded really good and for the time frame they had to practice and memorize I'm amazed at how well they did.
The beginning of the Memorial Weekend Av went to the Dells at the Wilderness with her cousin. She had a BLAST!!  Of course it was no fun coming home, but I think she enjoyed some down time. Summer is right around the corner so let the camps for Av begin. Her first camp is going to be a week long confirmation camp which is about 1 hour north of home so not too far but she's not too impressed as they go 3 days after school gets out. The end of June she has diving Zones over in Iowa for the weekend and then she'll stay they through the week and do a diving camp there too. Should be fun, she really misses the Hawkeye Dive Camp there. It was her first diving camp ever and she still says it's her favorite. As of now Av would really like to go to Iowa and be a Hawkeye....time will tell to see where she ends up going to college.  It'll be neat to see what she's going to be when she grows up.  Skies the limit!! Av's been seeing a new physical therapist about her knees.  This one is doing a technique called dry needling and then add electrical current to the needles while they are still in.  She says it's helping, slow and steady I guess.

video
Dan has the new building construction progress moving along. It's really cool to see it take shape.    I can't wait to see what will occupy the spots.
 At least I know I'll be getting some flowers - teehee. Between installing equipment in a couple laundries for others, a big sanitary addition in the town, some sanitary lift station issues, the regular 911 calls for the fire dept and first responder, maintain our 2 laundries, and our running around the country with Av this summer - Dan is always on the move and busy. I surprised Dan with an early Fathers Day/40th bday present and got him tickets to go to Bristol in August for the night races. It's been on his bucket list for awhile so Dan and I will be camping in the RV in the Bristol Campground and taking in the NASCAR experience with seats on the Front Stretch.  Should be a great time ~ now to work on care for Danny!!


I went and got my roses tattoo on my back redone last week.  It's amazing and beautiful.  Another one of Jake at Wicked Ink's creations.  Here is the before and after photo....can you believe he designed this all free hand and on the spot.  It's looks so different, I'm in awe as to what he can do. "Not all illness is visible ~ Not all pain is obvious"

I've entered in a whole new experience with my MS. Last Thursday I had a permacath central line put in my chest so I can receive plasmapheresis which is where they are taking my blood out, spinning out my plasma, then replacing it with albumin, and giving it back to me. It's thought that the protein that is attacking my system is located in my plasma so if it's taken out and hopefully reset I will have less MS issues. Right after the line was placed they put me in a room and started the new treatment right away.
The treatment goes pretty well, other then I freeze as they are taking everything out at body temp around 98 and then it comes back to me at room temp about 71. So I sit and just shiver!!  I have this everyday for the first 5 days (except I was able to not go over the holiday weekend) and then once a week after that.
The line has been complete hell!!  I had alil sedation and I could still feel the discomfort of the line being threaded in my chest, then when done they gave me no pain meds and I'm telling you, wow is it uncomfortable. It's day 5 for me and I finally can lift my arm on the left side, turn my head side to side, but I still have a significant pinch in my chest when I take deep breathes in.  It seems I either have a skin reaction to the stuff they put over the line to keep it clean and sterile OR I have an infection. Today during my treatment they did a swab/culture to see if it's infected and then as a precaution they gave me an antibiotic.  Of course I would get red mans syndrome from the antibiotics which was pretty miserable.  I turned red, hot, and itchy all over...nothing alil benadryl and tylenol couldn't help though.  Looks pretty bad doesn't it.  UGH!  I'm so done with MS and all the grief it's giving me ~ DONE!!
I have a neurologist appt tomorrow so we'll see what she has to say...if this treatment is going to be a  new normal for me I am going to push for an alternative way other then this line in my chest.  It sucks!!
Stay tuned ~ I hope you all had a safe Memorial Day!!

Thursday, May 7, 2015

Teetering

YES we are still at the hospital, we've been here for over a week and unfortunately we haven't found any reasons as to why Danny has had this set back.  Depends on what Doctor you ask. Neuro says all this was triggered by the pneumonia (which he still has NOT had any symptoms of having other then lots of fluid in and around the lungs on a X-ray). But if you ask all the other doctors they will say all this is happening due to the progression of his dysautonomia from the brain damage, so his brain isn't telling eye thing what to due properly. Ugh - Play nice and be a team!  Much to my disappointment there really hasn't been anything for us to grasp as to a concrete diagnosis. I can tell you these episodes he's been having are the worst I've ever seen with intensity and it's effects it has on Danny wile he's in one. Danny's now on 2 hardcore iv narcotics to use as rescue meds, which just breaks my heart. My hope is once we get him over this hurdle things will go back to normal and this protocol will NOT be the new normal, but if it is I'm ready to maintain this at home. The broad spectrum antibiotics that they started on Danny, as they still don't know what they were treating, has now stopped which is a good thing. Now to make sure his numbers showing an infection do not climb back up. Even though he has "pneumonia" (not really) they haven't changed or increased his breathing regimen from home. He has tolerated his food so there has been no change for that either. So other then the rescue meds there really hasn't been a change from what we do at home - SO I started the push to go home.   I'm sick of being here for "observation". We had the all clear to go home yesterday, until his labs came back with his pancreas levels starting to elevate.  Why go home if there's an issue showing itself, right - Did we find the trigger to this tail spin of events.? They did an ultrasound today to check how his pacreas, liver and spleen look like and I believe all is well there.  So a other theory has been thrown down, more and more dead ends.  Once labs are done tomorrow morning if they are stable I'll be pushing to evacuating this room. There have been multiple issues with med screw ups, improper equipment setting, lack of listening to mom/care for Danny so the sooner we get outta here the better. It's really disheartening how fast things get screwed up more when in the hospital.  I'm on guard at all times while here.

Dan took Av to her doctor appt about her MRI on her knee. There was some signs of calcium in her knee but they believe it's still to her knee cap moving. They recommended a new brace for her to wear and to continue physical therapy to strengthen her muscles in her outter thighs.  It's believe that she will grow out of this once she stops growing. Time will tell so we shall see.
Tonight is Av's last band concert of the year and I'm extremely bummed that I am missing it, but I've instructed to have it videoed so I can still see it.  Wow where did the year go?

I was pretty excited to see my lab and MRI realists were finally posted this morning online. All my labs are looking fabulous. Actually this best they have been in a really long time. I believe another bonus to they nutritional cleanse I'm on. Woot woot. Despite me being on a new MS med and feeling pretty good (just some neuropathy in my left leg, arm, and hand), the imaging has shown more newer lesions in addition to more of the ones I already have growing. SHIT!  I'm not sure what is next in the MS journey but I'm just going to take it day by day and enjoy each and every moment. Definitely not the news I was looking for and I so didn't need this right now, but it is what it is. I've sent both my neurologist emails to get their opinions on what to do as I don't see them for a few more weeks. I'll be anxiously awaiting to see what they may say.

What a desturbing, unsettling, senseless,and saddened event has occurred in my hometown. On a walking trail an armed depressed man opened fire at people enjoying the beautiful evening. Now a father and his 11 yr old daughter has died at the scene the mother is in serious condition but recovering from 3 gun shot wounds while saving her 5 & 7 year old from being shot. A gentlemen riding his bike had been killed and then the shooter turned his gun on himself also resulting in his passing. Just heartbreaking!!  Prayers for not only the people involved but for all the people effected by this terrible event.  It's definitely shaken myself and I know many others in our lil city.


Friday, May 1, 2015

Updates

Things are moving in the right direction around here.  We are getting answers!  We are finding that the most of the issues Danny has presented us with the last few days was just the calm before the storm. His system went into a " hibernation" state ie low temps and heart rate due to a significant infection that he was brewing. Despite me not wanting to be here I'm glad we did as many things have fallen into place with seeing some specatular specialists and having a lot of tests being done.

I was very surprised that they wanted to do a chest X-ray as Danny wasn't symptomatic with having any respiratory stuff going on. I was even more put back when the X-Ray had shown significant edema and effusion on both sides. Full blown repository infection!!  I was Totally caught off guard on this one. So due to the infection most of the other medical issues have started to become secondary symptoms because of this illness. Danny's Respiratory treatments have increased, they started antibiotics, and Lasix to help remove the extra fluid to help fight this off.  The doctors are on the fence as to label him with sepsis buttery  are not ruling it out as he meets most of the criteria of being septic.  It's amazing how things can change.  The cardiologist has now stepped back in the treatment/care as his heart was just reacting to the illness.  So right now, no talks of a pacemaker at this time. His goal is to recover from this infection.
Due to his neurological status and episodes he's had here the doctors had an EEG put on. Thankfully they chose to do put the EEG on as with this illness they have not only found the increase of dysautonomic storms (which we knew already and have been trying to figure out) but they have captured multiple seizure also.  While we are here we saw a couple neurologists who are amazing. One specializes in dysautonomia and the other specializes in movement disorders. Love their attitude ideas and personality. We are going to start a new med to help with his dysautonomia and tweeking his seizure meds now that we have seen more.
What a relief it is to know there is a reason for all this drama. Having a great team the last 2 days has made a world of difference. To have a team that listens, acts, and cares makes this mom very happy.
The plan is to see how he responds to the new med for dyautonomia and the abx for the infection, if all goes well then we shouldn't be here too long. What a relief !!

Yesterday Av Had her MRI on her knee. We'll be talking with her doctor next week to see if they see any particular reasons as to the pain in her knees. It's nice that there is alil break from dive competition to give her knees some reprieve. She's still going to practice through the week but we're just taking it back some.
At dive Regionals last weekend in Milwaukee went great. Av placed 3rd in both her events. So it's off to Zones in Iowa the end June. If there wasn't any region hopping she would have won the regionals as the first place winner was from Fl and 2nd was from IN. Way to go Av!!!

Thursday, April 30, 2015

Admission

Well with Danny the wheels have fallen off  and we are vigorously working to see if they can be put back on or if they are truly broken.  Danny was admitted to CHOW last night with extreme hypothermia, VERY low heart rate, low platelets, high PTT (blood clotting level), and very lethargic and not responsive.   I was really hesitant in going down, but I knew something was up with him. His physicians were all pretty concerned so off we went.   We arrived at the hospital we were able to go directly up to the intensive care floor instead of having to go through ER first. Once he was situated in the room they set up all his monitors and his heart rate was 34 and his temp was a frigid 84.9 - WOW!  Now that's taking low to the extremes.
We are still in the testing stage, and lots of them. Urine & blood culture, ultra sounds of his leg to see if there are blood clots, X-rays of chest to check lungs, another EEG, and tons of labs.
This is what I know so far about 24 hrs after admission. His lungs have edema (water inside) and they have effusion (water around the outside). His plateles continue to drop and his PTT level continues to climb.  His liver and some levels of his thyroid functions are evelvated.  The episodes he's been having we're found to not be seizure activity but significant dysautonomic storms. The neurologist feels his hypothalamus (part of brain) isn't working properly. So it'll be tricky to figure put some of the treatment for the storms with his already low heart rate.
The question of the hour is why and how is he so sick. Is something driving all this or is each one related to each other. Danny is definitely keeping everyone busy trying to figure all this out.
I'm Totally exhausted mentally and physically so I'm going to turn in for the night. I'll keep you posted on how things are progressing

Saturday, April 18, 2015

Let the construction resume.  The weather is nice and the snow & frost are gone.  So it's back to business, as usual.  Of course Dan had to get a new yellow "toy" to play in the dirt and rocks.  This is our building site for our new building with up to 3 spaces available to lease.  Things are starting to take shape and the contractors are eager to start constructing the building.  We already have one spot rented to a florist.....YAY as it will be convenient for me to have fresh flowers more :)



 There has been a HIGH fire warning out the last few days and it's keeping the fire department busy.  This fire, the rat river marsh fire,  was started due to sparks from a nearby train track.  Very disheartening that it happened as it burned approx 1,000 acres, but thankful no buildings were destroyed and no one was injured.


Dan is currently in Atlanta this weekend broadening his knowledge at a Clean Show Convention.  Good god I can only imagine all the top notch laundry equipment that is there and all the ideas he's going to come home with.  LOL

Lil Man had another EEG to figure out what going on with these "episodes" he's been having.  It's one thing to have the episodes but they last pretty long and between the effect of the episode and the effects of the amount of rescue meds he needs it's throwing his system into a tail spin with not being awake, low temps, lack of peeing.  I was happy that he actually performed this time while the equipment was on.  2 very long episodes!!  Which was nice that Danny only had to wear it for 4 days and not 7+ days we had thought.  I mailed back all the equipment and now we wait to see what the Neurologist can see.
Starting to get hooked up
 all the equipment
 He's no longer wireless anymore
 Too much excitement for him.....nap time.  It didn't help he had a long episode just 2 hours before they came to the house to put it on.  I was so glad he still had more activity when they had it on him as I alil worried we missed our opportunity to capture anything
 Brain waves.....it's so interesting.  If I was to go back to school, I think it would be to learn how to read these things.

 Photos of his "episode"
Here's a video of him :( 


Well it's been 2 months since I started this nutritional cleanse.  One word.....AMAZING!!  Amazing result, amazing energy I have now, and it's amazing how great I feel.  Whala the new and improved ME :)


Yesterday the weather was gorgeous out...the temps hit 73 degrees and I worked outside and enjoyed every minute of it.  I planted 15 trees, got about half of the lawn furniture and yard decorations out, and gave all three pups a shower.  It was wonderful!!  Today it's not as nice out and tomorrow the weather is suppose to be even cooler with rain.  We NEED the rain, but I still would like some warm sunshine alil bit more. I was so enthusiastic to be outside I hit my step goal before 1pm, funny when my fitbit calls me an over achiever.  For dinner I went out with Ms Gail, our former primary nurse.  It was nice to sit around and catch up :)

Last weekend Av, myself, my nephew Tyler, and Tami hit the roads to Chicago again.  Av had another dive meet, her last before regionals in Brown Deer on April 25-26.  It was a very small meet, but great experiences non the less.  Av took 1st place once again in BOTH the 1M and 3M events ~ Nice JOB!!  She's been practicing this week to increase her dive list to some more difficult dives to stay up in the competition.  Next year she moves up a diving age level and she will definitely have her work cut out for her.  Here are some videos from our last Chicago excursion.  

iFly
Click to play this Smilebox slideshow
Create your own slideshow - Powered by Smilebox
Personalize your own slideshow
Dive Meet

Click to play this Smilebox slideshow
Create your own slideshow - Powered by Smilebox
Picture slideshow personalized with Smilebox
Our Chicago excursions
Click to play this Smilebox slideshow
Create your own slideshow - Powered by Smilebox
This free digital slideshow created with Smilebox

Thanks for checking up on us!  I hope this finds you and your well.  Enjoy the Spring and stay healthy my friends!!

Saturday, April 4, 2015

 Gunner got himself all spiffed up for Spring!  He's a whole new pup now :)

 Last week we went out to eat with some wonderful friends to Nakashima's.  It was so much fun watching Ms Paige's reactions to the chef cooking right in front of us :)

 Have I told you how much I LOVE waking up to this smiling face.  I know I'm alil bias but isn't he the cutest thing EVER!!


 On Palm Sunday Av was the Acolyte for the 1030 service :)  It was a wonderful service and we even won a basket at the Auction for the Youth Mission Trip.
 Of course I had to pull a couple April Fools Day pranks on Av....my favorite was when I made her a pan of Brownies.....she wasn't at all impressed. Teehee
 Av has been having issues with her pain knees so I brought her into see a sports medicine physician and she also had xrays n ultrasound done.  Come to find out her knee caps have too much movement which has inflamed the tendons.  Av is now having to wear a brace, tape, is on anti inflammatory meds and cream along with starting Physical therapy to help strengthen and stretch her muscles and tendons.  They've diagnosed her with Pallar Tendinitis and Patellofemoral Pain Syndrome, both are fixable but she may continue to have issues until she is done growing.  I'm glad I took her and had things looked at sooner then later.


 Last nite was Awards nite at Brigade.  I just love that she is into brigade and has a great time there.  Until next year!  Av will be attending summer Brigade camp once again this summer.  Out of all the camps shes done Brigade was the one she picked over all the rest to go back too, that is other then dive camp ~ lol.


 Someone thought she could walk out on thin ice ..... um NOPE that was chilly I bet!! LOL

 There is always and I MEAN ALWAYS something going on around here.  Just when we think all is good ~ WHAM!  We had a customer at our Oshkosh store think that the building should be a "Drive Though".  Yeap his intoxication dumb ass drove not is own but someone elses vehicle into the side of our building while driving without a license.  Can you say WINNER!!  Oh and the woman who owns the car thought if she didn't turn this into her insurance it was just going to go away.  I don't think so!!  So we will be doing some remodeling to Oshkosh to repair the pushed in wall.  It's getting to the point where not much surprises me anymore.

Av is spending this Easter weekend at the Mall of America with a fellow diver and friend.  Her friends mom and myself were able to surprise the girls with a snorkeling excursion at the aquarium there in the big tank with fish, shark, stingray and such.  So jealous!!  I'm so glad she is having a great time and I'll be sure to share photos once I get to see them :)

Last weekend we were back at chicago for dive meet and this time we took my mom aka Nanny.  It was definitely an experience!  We had a wonderful time and Av brought home 2 more 1st place medals.  I'm SO Proud of her!!  Next week once again we'll be down in Chicago for another meet.  Our last meet before Regionals the end of the month.  Stay tuned !  For now here is another slide show of our last meet in the Windy City

Click to play this Smilebox slideshow
Create your own slideshow - Powered by Smilebox
This picture slideshow personalized with Smilebox

Friday, March 13, 2015

Spring forward

Yesterday I got energized and started to Spring clean.  The temps were in the high 50's,  the snow is melted, and it was SO NICE to have a few windows open to get some fresh air in the house again.  I was able to get Danny's Lido deck all cleaned up and it's now open for the season, whoop whoop!!
 The sub zero temps that we have been accustom too are behind us...I HOPE and it's rejuvenating to see daylight longer and longer.  Spring might just be here and I'm SO READY!!  The one downfall of spring is the wheel barrel loads of poopsicles that have to be picked up in the yard.  They are so lucky I love them!!

Danny is all about getting outside and going for walks.  He's so loved by the neighborhood, when they see him out they all say HI or run over to see how he is doing.  I just LOVE our neighborhood !!

With the warm weather out I'm just itching to get my Cobra Convertible out!!  Going to give it a few more days and then bring her out of storage :)  Feeling like a million bucks also is exciting to be able to drive it as it's a manual.  Many times when me legs are too weak I can't drive it, so I'm feeling great and ready to get behind the wheel.

Talk about an overhaul.  I can't even begin to tell you how amazing I feel and look.  Getting my body back to an alkaline state with all the yummy products on this Nutritional cleanse is phenomenal.  I still have a week to go to complete my first 30 day program. I'm so impressed already I am going to do another one right away as I have not met my goals and I'm now a consultant.  I just LOVE sharing how amazing it is and I can't wait to get YOU started to becoming a healthier YOU too. The energy I have now and how great I feel are uplifting not to mention the bonus of loosing weight and inches.  Stay tuned to the final results soon!!  What a nice surprise to put on a pair of jeans this morning that are too baggy for me now only to find out they were actually a size smaller then I normally wear.  AWESOME!!!!  I have to say I can't wait to go clothes shopping for this summer.....I never thought I would be saying that ~ EVER!!
 

    I went to the dentist last week and got started on getting my teeth whitened.  In only 4 applications my teeth have already changed significantly :)  It is fantastic!!  The only draw back is I have decided to do it every other nite or every 3 nite instead of every nite as my teeth are really sensitive now.
   Today I took on a new spring look with coloring and highlighting my hair.  I learned 2 important things ~ 1. highlighting long hair through a cap really hurts and 2. don't multitask when color is in hair as you loose track of time and the 45 min wait period ends up being 1.5 hrs.  OOooops!  I don't think I fried my hair but it's definitely lighter then I was going for.

Danny is doing fabulous.  The addition of Clonezepam has worked and we really haven't seem many "episodes" lately.  I still haven't gotten a call back from the EEG company as to when they are coming out to put it back on his head, but I can't say I'm in a rush now seeing we have things under control more.  The new nurse this week turned out to be wonderful.  I think she is going to be a great addition to Danny's team.  It's so nice to have a full schedule back, at least for the moment as one of the nurses will be leaving soon on maternity leave.  Not too much to report on the Danny front, which is awesome!!  His runner Annie is running her first race of the year for Danny on Saturday....we'll be cheering her on every step of the way :)  GO Annie GO ~ Thanks for running 4 Danny


Last weekend we were in Chicago for a dive meet.  Ms Av ROCKED that meet.  She placed 1st in 1M, 3M, and in synchro diving with her teammate.  SO PROUD of Av ~This kid is going to go places I tell ya!!  The end of the 3rd quarter for school is next week and as of right now she continues to excel in school....4.0 grade point average!  She's AMAZING!!
Av's Teammates and her fabulous Coach!  He sees her potential and pushes her to be an amazing diver!!
Of course a trip to Chicago wouldn't be complete without stopping at the Oasis and sitting over the traffic while eating some food :)
We are back in the Windy City next weekend, but this one will be more downtown.  Heading out with Av, her teammate Izzy, her assistant coach n friend Tami, and my mom aka Nanny will be joining us.  How cool is that!!  Fun times poolside and then it's off to walk the streets of The Loop :)  Stay tuned for more Av achievements. 

Here is a slideshow of her time in Chicago for the Chicago dive Invite 3-7&8.
Click to play this Smilebox slideshow
Create your own slideshow - Powered by Smilebox
This digital slideshow personalized with Smilebox

Thanks for checking in on us!  I hope you are able to enjoy some of the spring weather!!