Tuesday, June 24, 2014

Say it isn't so!!

The pit in my stomach has me on edge, but this too will pass.  It will just take some time!

Today is the first day without Gail.  I have to say reality hasn't totally sank in yet, but the uneasiness is coursing through my body.  Today's nurse is doing great, but I still can't shake this nerve.  I know it will take some time before I can let my guard down.  As one week to train 3 nurses just doesn't give me the warm n fuzzy feeling with them yet.  BUT so far I like them all, they are nice, their personalities are all different but fit in well with our family, and they all LISTEN to what Danny needs.  SO I can't complain :)

On top of all the newness of Nurses ~ Danny has decided to throw another curve ball at us.  Of course ~ if I'm starting to feel better then he needs to bring on some drama.  It's like a relay race or tag team, I'm done so now it's your turn.
The last few days Danny is not regulating his temperature, heart rate, and BP.  He has kept us all on our toes to say the least.  Last week his heart rate was at 31 before I even gave him his nite meds.  I was pretty concern and was definitely watching him like a hawk.  On Friday we took him in to see Dr K for some labs and a look over.  Before seeing him, Dr K ordered an EKG with the sudden onset of low heart rates. I was surprised at the results.  I obviously knew about the bradycardia (low heart rate), but not the other 2 findings.

 Rocking an EKG :)
 All the labs came back "Normal".  Just when I was hoping there was something to show up, as then it might have been an "easy" fix, but no such luck.  All is good on the Danny front, but Danny isn't doing good, hmmmmm.  We are still awaiting results from 3 of his med levels, but I'm going to guess those will be fine also seeing we haven't changed or added a thing.

True Danny form....it's not going to be easy!!!

Sunday around 4pm his temp was LOW!!  I know he's a "cool" kid as his temps are not like a "typical" person (he likes to hang around 95-97), but his rectal temp was 90.4, he was pale, and VERY lethargic.  EEEEPPPP!  I paged his Palliative Dr down in CHOW to get his opinion and Dr John felt he needed to be seen ASAP at the local ER.  UGH!!  So after packing up our things, just in case we were going to get admitted, we were on our way.
Entering an ER with a kiddo like Danny sends the staff into a crazy frenzy ~ LOL.  We were directed into a room right away, despite people waiting in the waiting room.  We ended up being there for 5 hrs ~ which is a very long time when all they did was labs, urinalysis, chest Xray, and another EKG.  Everything once again came back "NORMAL".  UGH!!  Even the EKG they did in the ER was better then the one done 2 day prior.  All the new one showed was Sinus Bradycardia.
Not that I want something to be wrong with him, but a clue as to why Danny is acting like this would be nice.
NOPE, not with Danny....he's going to make us work for it.
Once again I got COMPLETE confirmation as to why Danny will NEVER be left alone in a hospital setting whether it be ER or admitted.  Too many people NOT LISTENING or PAYING ATTENTION to what Danny needs.   The "advocate" (nice way of saying bitch) has to come out.  I have a "rap sheet" that I hand them right away with all his DX, RX, allergies, Dr's, and such.  A 2 page summary of all the needed info about him.
My run down of issues within the 5 hr stay.  And you all wonder why I'm so anal, OCD, bitchy or call it what you may, but here.................

1. Thankfully I brought his 9pm meds along with us as there was no mention or concern from the staff about him taking them or needing them

2.  Thankfully I brought Danny's correct size port needle and proper dressing needed as they were going to wing it by putting in a different size needle and just dress it with gauze n paper tape.   I waited to see how far the nurses was going to get with the wrong tape on the table.  Obviously she didn't look at my sheet OR the the computer chart stating his allergic to tegaderm.  I waited till she was all sterile and ready to access his port before I mentioned "I hope you are not going to use that dressing as he's allergic to it".  Deer in the headlite look was give to me from nurse and then she had to leave the room and become unsterile to find the proper stuff needed.  LOL - I have to get my kicks in somehow, teeheee.  Once she returned she stated they don't have sorbaview (dressing that he has a lesser reaction too) and they were going to dress it with just gauze n tape...Um NO.  I'll get our stash which is in his go bag on the wheelchair.  This is a hospital right?? NOT HAPPY!

3. They needed a urine specimen...no biggie right?  WRONG!!  They had this cool set up that I've never seen before where the cath is already in a bag to collect.  Might have to look into getting those for the home, but to my point.  As I'm watching her I state how big is that Cath, her reply was 8 or 10 fr.  Hmmmmm, That looks to be pretty big for it to even be a 10 as that's what we use at home.  She proceeds to collect what they needed and leaves the room.  I go to the garbage and grab the packaging to find.....this.....
14FR WTH ~ you better know what you are talking about and what your doing with my kid!!!  NOT HAPPY
 4. They put his cool bear hugger blanket on him.  It blows warm air on him to get his temp up.  I might need one of these too, lol.  Well they had it on him wrong to begin with .... not a big deal, but by this time I'm already boiling!
5.  Danny's BP was low (86/43) so the Dr ordered a fluid bolus to try and bring it up.  Um...."does the Dr know Danny has SIADH  (meaning he can't get rid of excess fluid and has sodium level issues).  Again ON HIS RAP SHEET of DX.  Nurse can't confirm so goes out to check.  Dr comes in and wants to know what my questioning is all about.  Mind you with this Dr you might as well talk to the wall as you'd get a better respond and attitude.  I just asked if he knew about Danny's condition and stated "if you do this, we could potentially be having bigger issues".  He acknowledged, like I was talking out of my ass, and left the room.  So he changed the order from 500ml/hr to 300ml/hr.  Hang on tight let the fun begin.  Danny currently has significantly pitting  edema (swollen and leaves indents wherever touched) and has gained over 1 lb due to the excess fluid.  2 days later he's still holding onto the fluid, but thankfully we haven't noticed any sodium imbalances. 

6.  Dr called transport from CHOW in Milwaukee without so much as asking me.  So once he came in to tell me that the local CHOW will not take him as he's too complex (I still find it funny that it's ok for me, with "no medical backing", can take him home and care for him, BUT a hospital will not admit as he's too complex.... WTH is wrong with that picture).  I stated that due to all his labs and tests coming back normal, there is no reason to admit him.  My main concern was he was going sepsis on me...and all the tested stated that wasn't the case so I will take him home as I can keep him warmed up at home while we try to figure it out.  He was NOT happy that I refused medical advise,but I know my son and we'll be just fine!!  Let me sign your paperwork relieving you of all responsibility and let us go home.

By the time paperwork was done and we were on the road home at 12:30am....Danny was pissed off and completely opposite of why we brought him in.  He now had a high HR of 105, temp was high and he looked like a beet, and his BP was elevated.  
My gut says all of this is part of his autonomic dysfunction aka dysautonomia.  
For now it's going to be his new normal of trying to maintain body temp and heart rate even more.  
So last nite with the temp in the house of 76 and muggy here he is with his winter hat on, electric blanket on and heating, along with long pants and long sleeve shirt, and an extra blanket.  We are all roasting but not him.
WOW ~ Danny you do know it's the end of JUNE? 
We really still don't have an answer to why Danny is doing all this, but we are working very hard to figure it all out.  Guess he wants to give the new nurses a run for their money...OR he's rebelling that Ms Gail has left.  I know I am :(  Tears were flowing last nite as Gail walked out the door for the last time as our nurse.   We love her but Miss her dearly already!!

I was told I needed to take some time out for myself and relax.  Try to unwind through the day and let the stress go.  Easier said then done in my world.  BUT I do acknowledge and appreciate the the good fortune I have been blessed with. 
How cool is this Oasis ~ even better it's my own backyard!!
I have been improving!!  I have to say it's uplifting and rejuvenating to feel the slightest bit better when feeling like shit for a long time.  I know I over do it, but it's so hard not to take advantage of the things I can do as I never know when I won't be able to do them again.  I can't say that the new regimen I'm doing to control MS is a walk in the park, but if it keeps me walking and functioning longer then....BRING IT ON!!!

Avrianna is gearing up for her first Camp of the summer.  This Camp is up in Crystal Falls MI aka (the U. P.) and it's her second year going.  Let the summer running fun begin!!  I have a confusion, I'm going to miss Av immensely while she's at camp, BUT I am looking forward to a week long vacation of running her all over the place.  Thankfully she is going with a friend and her mom was kind enough to take Av up there so all I have to do is get her home.  We are planning on heading Up North For the Fourth and hanging out with Papa Dan and Nana Claudia in Tomahawk.  We haven't seen them in awhile as we all know about my family health issues lately, but they too are having health issues.  Seeing Tomahawk is along the way (somewhat) we are going to hang up there.  
Once the RV gets back next week from the repair shop I'll will begin the packing process.  Oh BOY!!
When she comes home from camp it's GAME ON, to prepare for Diving ZONES July 11-1.  She's been working hard to prepare already, but having a week off while at camp she's going to have to step it up some.  She did fantastic at Regionals a few weeks ago and advanced on all of her events 1M & 3M springboard along with the 5M platform.  Now if she qualifies to advance to Nationals that will be a week long event down in Tennessee.  
The RV is going to get it's workout this summer!! 

Dan is alil disappointed in the race cars performance this last weekend, so I'm sure it there will be some tweeking before the next race.  He's been one busy guy, but when it's he.  Lots of new exciting things going on around the Oshkosh Store as we are in the beginning stages of tearing down the house on the corner and then building a 3 space occupancy building to put in it's place.  The trees are being cut down now and then it's a matter of figuring out when to demo the house.  New ventures and avenues he/we are exploring.  There's always something in the hopper with him :)

With all of that, there are some fun things around the house/family.  Once the surprises are up...I can post more.  
Stay tuned!!

Friday, June 13, 2014

Ever Bending Never Breaking

Yeap this post title pretty much sums it up.  Change is something our lives are used to.  It's ongoing around here but also can Change take us by surprise.  It's taken me awhile to figure out how to write this post.  So here it goes the good, the bad, AND the ugly.

Av is OFFICIALLY an 7th Grader!!  Watch out Shattuck Middle School here she comes.  She passed 6th grade with straight A's for the whole year, WOW!!  She is even skipping 7th grade math and going right into 8th grade.  She's AMAZING!!
 Getting her 6th grade recognition award from her Enterprise House teachers ~ Ms Galica and Mr Sollitto.  They were wonderful teachers.  I know she misses them already :)
 Me n my smart beautiful wonderful young lady :)
 This weekend Av is at her first Diving Regional meet.  She placed 6th out of 18 in her 1M springboard advancing her to Zones in July, and she automatically advances to Zones on the platform.  Tomorrow she dives the 3M and Sunday she dives off the platform.
I am hanging out with Danny this morning as I don't have nursing hours until later this afternoon so Dan is with Av at Regionals today, I'm bummed as I've never missed a Dive meet until today and it was one of the biggest meets for her to date.  I will be there tomorrow and Sunday so it's not a complete loss on my part.  I LOVE to watch her dive....as I'm in awe of her and how well she can dive.  I'm so Proud of you Baby girl!!

I started the Disease modifying drug Copaxone last week.  It's an injection that I do every other day.  Here is the autojector  and syringe that I use.
 The actual injection doesn't hurt, but about a minute later......WOWzers.  I stings like crazy and then the red hot welts show up and usually stick around for about 4-6 days. I have hard knots under the skin even from the first injection 10 days ago ~  NOT COOL!!

My legs are starting to work better, and my walking is looking normal.  They still fatigue easy and have alot of sensation issues but I'm better and that's all that matters.  I'm not planning on being back to my old self, so any improvement is exciting. I would have to say the worst for me right now is my left hand/arm.  That too has better functioning, but the nerve pain is unbearable at times.  It has a constant needle n pins feeling and if it gets touched it goes to feeling as if razor blades are slicing my arm.....it's PAINFUL!!  Mental note when nerve pain meds are nearing the end of there therapeutic range...do NOT go and get nails done.  Man I was about to come out of my skin when it came to my left hand.  
I went from being on NO MEDS to being on 1 disease modifying med, 1 for headaches, 1 for walking, 1 for nerve pain, and 1 for spasticity.  I had a very hard time with it all.....was I failing as I couldn't control it naturally or was a failing as I had be on these meds.  I felt as if I looked like MS :(  It hurt!  I didn't and don't want people to look at me and say awe she has MS, I want to be the one that when looked at they say Can you believe SHE has MS.  I'm still trying to wrap my brain around all of this and how fast things can turn.  For a person who likes to be in control its a hard "pill" to swallow when I have NO CONTROL over this disease no matter how much I say I do.  MS is a nasty painful debilitating disease...I wish this on NO ONE.

I had gotten the results back from my CT scan that was done to check out the "cysts" that were found on my last MRI.  I was told everything looked good, but my liver showed "some" enhancement so I need to redo the scan in 6 months.  BUT ~ once I finally was able to read the radiologist report.....which I believe is the same as the Dr's read, right?!?  The one thing that WAS found is that I have Gallstones (no wonder I'm having issues), but NOT 1 of the 2 Dr's I talked about the scan too had mentioned this to me.  WTH?!?!  This is very disappointing!!  Now to figure out what to do.  I'm sure if one of them decide to go on the move I'll not only get really sick, but I can bet it will throw me into a BIG MS flare up, UGH!  A ticking time bomb once again :(

Dan was able to finally get his race car to the race track last weekend.  The car and driver did well :)  But the weather didn't hold off long enough for the day/nite to finish.
Last Sunday Dan and I were able to plant the 2014 Garden, we planted 24 Roma tomato, 3 pickling cuks, 3 regular cuks, 3 zucchini, 1 row of beans, 5 mounds of acorn Squash, 5 mounds of yellow squash, 6 jalapeno pepper, 6 green pepper, 1 Tabasco pepper, 1 Habenaro pepper, 1 red chili pepper and lets not forget my strawberries.  Some of the strawberries are already ready to eat, and boy are they yummy!!.  I know I had said we weren't going to have another garden this year, but we hired someone to help out around the house so I'm hoping we can stay on top of the garden better.  I should say Dan planted the garden and I supervised as after planting about 1.5 rows it was all I could handle :(  Here's to a good garden!!

Danny is doing well.  I have to say it's probably his best spring ever.  Usually he is a junky mess of allergies, but for whatever reason he wasn't bad this year.  I'm not complaining... I'll take it!!  I think whenever I'm in rough shape he's good and visaversa.  
It's with a heavy heart that I have to say Ms Gail is leaving us.  I KNOW!!  She's been with us for over 4 years and not only has taken great care of Danny, but has become my best friend.  I had always thought she'd be here forever, so shocked doesn't even describe it.    She'll be missed dearly!!  Gail is getting out of the private duty nursing and going to work for an insurance agency to help with workers comp claims.  I wish her all the best...as her best friend, but as her boss I hope she comes back....LOL!!

Gail is our primary nurse working Mon - Thurs (and also Fri since Ms Krista left, yes I'm starting to get a complex with the nurses leaving) 8-4, with the lack of Private Duty Nurses around here it left me no choice but to have a nursing agency come into the home to help.  I have said it before, but the agency stories I've heard have me very leery.  I had called an agency before and their lack of communication and interest just confirmed all my fears.  UGH!!!  I tried one more agency, ResCare, and so far so good.  They came out right away to start the process, they allowed me to interview the nurses that will be coming out to the house as I said only approved nurses will be allowed out to work with Danny, and they haven't asked for any over the top paperwork.  I'm cautiously optimistic.  I've met some very nice and capable nurses, so things might just work out.  Change isn't easy, but it doesn't always have to be awful, I just have to change my way of thinking about it.  Ms Gail leaving is difficult and I wish it wasn't so, but it is what it is and I'm positive we'll adjust.....We always do!!

"The ONLY thing we can control is the way we think and what we do"

My niece Whitney came over last week and brought Baby E.  I was in 7th heaven!!!  What a doll!  What a good boy!  What a cutie!!  I could eat him up.  I still got it ~ he was sleeping in no time :)  Can you believe he is 2 months old and 8 lbs 12 oz?  What a peanut!!  Danny was bigger then that when he came out :)

My cousin John is beating all the odds.  Don't get me wrong there has been some scary times and there will be some difficult days ahead of him, but he is alive and fighting!!  He is now opening his eyes, tracking, understanding, blinking to answer questions, squeezing hands, and wiggling toes.  WOW!!  Once again just proves doctors don't know what the end result is, they only have an educated guess.  Keep Healing John!!

Thanks for stopping by to check up on us!!  More exciting things ahead.....I'll keep you posted!