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!!!