Everyone's finally home!

It's day 4 post-op for me, and I  think I'm doing pretty well.  A few tears, a few angry words of frustration, a rash, some pain, a little miscommunication, and finally today the bald kid came home too!  He was admitted after a looooong night in the ER Friday night and was found to have a staph infection.  The big worry was that it was bacterial-and in his blood stream, which would be really, really bad with his donor valve.  A bloodstream infection like that would go straight to that valve and be bad news.  Fortunately (holy cow-luck?) it was only Staph Epi-or a skin staph infection.  Wooo-hoo!  Still means high dose antibiotic-and of course only comes in brand-for a mere $50!  And along with that a raw, little, red baboon behind for a while.  The good thing is-he only seems to fuss when the med upsets his tummy and then he poops right away and screams til he's changed.  Bad thing is-he does that 5-7 times a day!

It was nice to have him home today, though I can't hold him when he cries, or rock him on my lap, or hardly even lay down beside him, it is still very nice to have him back under the same roof!  And a huge thanks to my sister Kate and my Dad who shared staying down with him at the hospital overnight.  Apparently Ethan was not into sleeping too much the last two nights and my Dad learned real quick what Fentanyl is and when to ask for it!   And aside from Nutrition sticking their nose in his chart and demanding his feeds be increased significantly(which we did NOT, and WILL NOT do while he is having a separate issue-one thing to deal with at a time folks) and the Pharmacist refusing to approve his home Immunogbulin Infusion to be given last night, so he missed this week (makes me furious, especially when it's all sealed up in the maufacturer's packing with an order attached to it!) and the residents 'accidentally' stopped an antibiotic they weren't supposed to, and he missed three doses before my Step Mom (a pharmacist!) caught it and called them on it!  I think his stay was ok-at least I didn't  have to drive my invalid self down there and go off like a drug induced crazy woman-not that I didn't think about it once or twice.  I think my family sugar-coated everything for me anyway so I wouldn't be too tempted to do just that.  For that, I love them all! 

And a huge thanks to my Mom who stayed at our house on Friday and Saturday night and made chili dogs and did laundry and dishes, and took care of Parker and the dogs and made sure I came home to no stress!  By her doing that it allowed Brian to stay with me at the hospital-which was nice for me, and I think helped him too.  I know he feels helpless right now, and I did have a little pity party for myself at one point and told him to go away.  He knows and loves me though and walked away from me for a minute until I had gathered my senses back to normal and was ready for his help. 

And my sister Kim was a life saver the last two nights, being here, giving me my meds on time, making me breakfast and making me eat it, making me drink lots of fluid and reminding me to rest.  I love you and are glad you could stay.  I needed you these last two days and am so glad you were here.

Sunday evening was good, until I took my oral pain meds.  Did I mention that I was on my pain med pump until the absolute last minute in the hospital and actually pushed the button not ten seconds before the nurse pulled my IV?  So, since I was never given a chance to see if oral meds would work for my pain control while still in the hospital, my first dose on Sunday I had an allergic reaction to-rash all over my neck and up my chin and down my chest.  It can't be the med-I've taken it before-or something so similar it shouldn't matter.  But it did.  Call office next day anyway to schedule having my drains pulled and staples taken out on Friday as Dr Failing instructed not only me, but my husband, my mom, my Dad and step-mom and anyone else who was there to hear it to do, only to be told they won't do it that early-not before 14 days and since Dr Failing is out of town-and he left no orders, no staples being pulled.  His reason for this, as he explained to me, Brian, my Mom, Dad and Teresa is that longer than a week will leave staple mark scars, and he did not want that to happen.  Guess someone else can pay my plastics bill next year to have that fixed then.   AND when I told the nurse about my reaction to the pain meds-the other Dr she asked called in basically the same damn drug.  So, to appease everyone, I took it, and lo and behold-allergic reaction-rash on neck and chest and up on chin and face.  By this time I'm an itchy mess, sleepy as heck from all the Benadryl I'm taking and slightly irritated.

 Call office again, and I'm asked what MY suggestions are for another pain med then???  
Seriously????  I'm the patient, and I know I'm smart and amazing and all, but I have no f##*#*g clue.  So, I throw the name of a drug out there that someone suggests-Toradol.  NO-Dr Tripses WILL NOT PRESCRIBE TORADOL.  Well, WTF then???  If I have to go to the ER for pain relief, I'm sending my $200 co-pay bill to your office.  FINALLY at 2pm this afternoon-after having nothing but Tylenol and Ibuprofen for 24 hours the nurse calls to tell me Dr Wittek wrote a script for me for Dilaudid and I can pick it up.  Thank goodness!  Amazing how one 4mg Dilaudid made me feel so much better and no rash!!

And as far as discharge instructions and limitations go, I was told not to vaccuum, and not to shower.  That's it. 
Can I raise my arms over my head?
Can I lift anything? 
Can I drive?
Can I skydive?

amazing-nobody seems to know anything?!!?

And to top it all off?  I got a bill today for the BRCA testing for $3400!  Good thing I saved my 'approval' letter from the insurance company.  While talking to the insurance gal she kept wanting to 'check on this further and call me back'  No thanks sister, I got allllll day to sit here on hold for you-you are NOT getting off this phone call with me til I get some answers why I'm now being billed. 
Yep-mistake on their part.  Will get that handled right away and resubmit for payment.  Good thing I have a little experience with insurance bs.  Clearly gonna need it now more than ever!

Still no path results though, lots of tissue to go through.  They will do path on both breasts, and all 25 lymph nodes he took out of my right axilla.   I have to call the office on Thursday to give them the amounts of fluid from my drains to see if they are ready to pull on Friday or not-so I'm hoping the results will be back then, and we will know the stage I'm at.  

Otherwise, all is well, and  we are hanging out at the house, and being taken care of nicely by all the wonderful family and friends we have.  We have had amazing support from everyone and are appreciative beyond words! 
The meals have been fabulous and so helpful. 
The rides for Brian and the kids a life saver.
 The nice emails, cards and gifts...make my heart warm. 

Thank you all!