Hope is a Journey….

No Place Like Home….

There really is NO PLACE LIKE HOME…and that is exactly where I am NOT updating you from.   The good news is that 2 of the other 3 ‘Mito Sisters” have been discharged from the hospital.  We need to devise an escape plan to get Chelsea out of Mass General and me out of Lowell General and life will be as it should be!  When I was admitted on Saturday, I didn’t think that I’d have to stay this long – I figured it was a routine ‘tank up’ ER stay (usually last 2 days tops), but my body had other plans.

Usually my saving grace...

My blood pressures went extremely low (79/49…and for those who don’t know, they don’t like blood pressures that are below 80’s/50’s….just not a great place to be) despite being on constant IV fluids since Friday (at home – and that should have bolstered my blood pressures up – and always has in the past) and my blood sugars had been hovering in the low 80’s and falling into the 70’s with only a little time off the IV dextrose drip (for most, this is an okay range, but it has been well documented that I am symptomatic in the 80’s and 70’s). This did not give the hospitalist the warm fuzzies and it continued to be the only hindrance to my discharge since Monday.  The doctor tried 3 times to take me off the Dextrose and Normal Saline – that was a huge FAIL the first two times) – it was successful for a good while (my sugars dropped twice below the ‘acceptable’ parameters’ but I managed to convince them that we could check again in a few minutes to see what it was doing and, if we went up, we’d leave it (my IV had blown and I didn’t want to get stuck again).  My morning was pretty good – other than some crazy shortness of breath (pressure too) early this morning  – everything *except* my blood sugars was cooperating nicely.  At about 11 a.m., we hit the third time they dropped, and I got so ill from it that the doctor began the discussion again about having a PICC line or a Mid-line placed.  I was not thrilled with either of these interventions as they both pose significant risks, but everyone felt this was the best thing for me at this point.  The plan was to get the line placed, get an x ray to confirm placement and then go home (discharge planning had already occurred).

I can’t even tell you how freaked out I was to get it placed, I’m not a fan of ANY medical intervention (pills, procedures…just the one thing that sends me right off the edge), but the lady did a great job and the PICC is in, phew!  I developed significant shortness of breath again just after the procedure and it continued for more than an hour – all while my O2 sats were stable and my heart rate was low (so not anxiety…heck the hard part was done).  After a while, they decided to check vitals – my temp was just about 100.0 – and for those who scoff at this, my temperature averages  97.5 – and that’s what they’ve seen here – maybe a few points over the 98.0 mark in the past 72 hours, but that’s it). Then, they got me up (nature calls you know!) and my heart rate more than doubled – to the point that the charge nurse (who is fabulous) brought me back to the bed (the plan was to go the bathroom and then do a short walk to watch my O2 sats).  She went out of the room and returned 5 minutes later and said, “Hon, you’re not going home, sorry – but you just aren’t okay enough to go home tonight….”

During that moment, there was this very aggressive “REALLY?” and some other choice words roaring in my head…..and I just wanted to cry.  I’m so frustrated because I have SO much to do to get ready for Show of Hope (and my other partner in crime who is running this event is in the same boat as me in MGH) – so if any of my local friends/family can help with this, we really would appreciate any and all help (putting out fliers, trying to collect raffle items) that we can get….just shoot an email to showofhope@aol.com

SO…that’s it.  My arm is sore, I’m bummed out and bored out of my skull.  The ONLY bright spot in this is that Bob is mastering the CD tonight and he will be sending me mixed versions for approval as he goes along….so I have SOMETHING to look forward to (since going home, seeing my kids and the rest of my family, and sleeping in my bed are not options right now).

Okay…totally done my pity party…I just needed to whine a bit.  I know it could be worse and I know that this is nothing compared to what a lot of people I know go through, but for me – right now – the timing of this couldn’t be worse.   This Mito thing sucks…..big time.  

Friends ask me what they can do to helpDo you want to know what will help me?  Come to Show of Hope…..if you can’t come, make a donation towards the Show of Hope from our secure donation page….tell everyone you know about Show of Hope and tell them they can purchase tickets online (and be entered into a special raffle exclusive to online ticket purchasers)…help me raise money to find a cure for this disease – it robs SO many of SO much.

Thanks for letting me have my Negative Nancy Pants on…..I’m sending them home with Ralph to put in the laundry.   😉

Over and out….
A very Stir Crazy Stefani

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