Feb 24, 2012

Life as usual from room 211

Bad blogger.  Been feeling blazay.  (Note to self: that is a much under utilized word in my current vocabulary, increase the frequency of use.) 

Monday was surgery.  One night in intensive care.  Uneventful except for constant need for repositioning and pain meds.  The next 2 nights, ditto except in a regular room.  (Right next to where we were last week ... not sure why they feel the need to constantly challenge my short term memory of where I live.) 

By Thursday, he didn't even need any more pain meds.  They thought he had an ileus (psuedo bowel obstruction) but things resolved and all was working again by Friday. 

He's been in his wheelchair for 2 hours on Thursday.  Friday he sat on the couch for a bit. 

Day by day, he's getting stronger and back to himself. 

Surgery has cleared him for home.  Infectious Diseases will clear him Sunday for home.  Then we should head home either late Sunday or Monday. 

That is ... if he doesn't get any more fevers.  Today, he decided to spike a small one for about 8 hours.  Stinky butt.  As a result, they had to draw labs tonight. 

And me?  Getting ancy.  And tonight, must have eaten something that didn't agree with me as I feel like I have food poisoning.  It's the right amount of time after dinner until symptoms.  HOping this passes sooooon.  Ugh ugh ugh. 

Kaley is still an amazing helper and friend. 

In the meantime, I've been doing a bit of writing.  Mostly things about the hospital.  I wrote an article on how I feel that with "family centered care" that the pendulum has swung too far and patient care is actually suffering as a result.  (It's a whole philosophical shift.)  I gave it to the Nurse Manager on the floor as well as the head of the IV team.  I'm also beginning to collaborate on 2 articles with the IV team leader.  She came up with several ideas and we're jumping on them.  (More to come on that.)

But one is a case study of Manny and how the literature suggests 2 central line infections before starting an ethanol lock therapy.  But we're doing a preemptive jump and asserting that 1) because his first central line infection was so devastating to him he might not survive a second one, and 2) because this is his ONLY life line for food, and 3) he is running out of viable veins for central lines ... then why do we have to wait for 2?  It will be the first of it's kind. 

The second article will be a point/counterpoint of nurse/mom on all the times the IV team and Manny have interacted in the almost 2 years we have been coming here.  She said there are numerous case study type articles written by the nurse, but she's never seen one where it included the thoughts of both sides simultaneously.  She feels it will be a good read. 

I'm also trying to finalize the wording for Manny's book about Muscular Dystrophy.  I've been toying back and forth with the idea of making it just about MD vs. the idea of showing that MD is a type of Neuromuscular Disorder (the bigger picture).  I struggle because it's such a HARD, difficult topic that most adults don't understand, can I possibly make it simple enough for kids to get.  0r am I biting off more than I can chew?  I'm also waiting for a few people to submit some pictures to include in the book.  I need to take and get the cover picture to Shelli who is going to design the cover for the book.  I need to nail down the title.  Once all that is done, I'll typeset it on my Mac the way I want it and take it to the publisher for final editing and then publication/printing.  I was hoping to have it together by next weekend ... the local MDA walk... but it just wasn't possible while living in the hospital.

So that's about it.  Just life as usual from room 211. 


  1. hugs and prayers. Hope you get to go home soon!

  2. Becky Browder NeustadtFebruary 25, 2012 at 12:43 AM

    Wow. What an inspiration you are, Beth. I am exhausted just reading about what you intend to write - much less all else you do. I am so thankful for the uneventful and pray you and Manny go home on Sunday!! WooHoooooooooooooooooo!
    Sure hope your stomach ills pass quickly and that you and Manny get some good rest tonight.
    As always, thanks for updating. I think about you both so very much.