Please Hold

....blog will be updated as soon as I get to Osco, purchase The Little Penguin, and stop swearing.  

Thank you. 

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What a day.  First, a few housekeeping details.  You were warned about ranting in my profile.


I am mindful of the difference between slander and libel while writing this evening.  I am also mindful not everyone reading this blog enjoys or appreciates "four-lettered functionals" as my Dad called swearing.  Or at least the really good words.  Leave now if you are of the faint at heart, or squeamish about medical stuff.  And if you are squeamish, GROW UP.


However.


The next person that asks Steve "is the transplant gonna work?" is going to get their ass kicked by me, in public, with a full verbal take-down.  Would you ask an expectant parent, "what if the baby doesn't breathe after it comes out?"  Would you ask someone with a tumor, "what if they don't get it all out?"  STFU.  If that acronym is foreign to you, ask someone under the age of 25.  Thank you.

We *are* like expectant parents at due date, just waiting for engraftment instead of a screaming, gooey baby.  We know the bus is coming, and we want to get on and get to our destination.  Our minds are full of doubt and anxiety, it's not like we know ANYONE personally that has been through this.  Other blogs/message boards...well, I can't relate.  They are different people, different ages, different illnesses, different doctors, different hospitals and protocols....gawd I love saying prrrrrrotocol!  So fancy and medical and smarmy smartypants.  So we wait.  It's all about the labs.  And then Steve had rounds this morning, and it all got changed up and very confusing. 


We spoke around 11 a.m.  and he told me *they* (the Stem Cell team who is now running the show) wanted to do three things because he has yet to engraft.  Timeline:  1-3 weeks from transplant.  Today is Day +17.....tick tick tick.  

One was to give him an injection of Neupogen (our friend the synthetic hormone that was given to our donor, Mary, to stimulate white cell production), IV globulin (human "stuff" in a glass bottle that helps immunity and I *think* helps the spleen from destroying platelets....ahhhhh, THE SPLEEN RETURNETH!)...and....a bone marrow biopsy.  Seriously??  What the heck.  That was NOT on our radar.  Altman was SOOO much better to deal with, all info and "what if's" laid out, like a salad bar.  Hmmmm, might have a rash, might need dialysis, might be fine (yes...I'll take some of that)....and some Ranch Dressing and we'll take that to go home, thank you.

So I call Altman, she called back when I got to NW at 1:30, and we chatted about all THAT.  They want to see what is going on in the factory.  Hence, the biopsy. Have Mary's cells engrafted?  Or not?  If they have and are making new cells, is that effin spleen KILLING the new cells?  These things cannot be answered via a blood draw.

Options?  Yes, thank you, we have those.  The two other things (Neupogen and IVG) will be the first line....harvesting more cells from Mary is another option, and that was always in the cards, waaaaaay back, even before the harvest....and another, cutting-edge wildcard....HLA-typing our kids.  Imagine saving your own Dad's life?  I cannot. 


So, now the really ugly part of today.  And a lesson for those of you with customer service issues.  

The biopsy kit (oh yessss, you have seen the kit on this blog!  hahaha, I was chuckling, in a twisted way when I saw *it* again, thinking, yo, that's so my blog!) was waiting for Steve outside his door when I got there. TOP SHELF NURSING.  They had it all goin' on, waiting for those-who-make-more-$-got-more cred-yet-are-not-necessarily-more-on-their-game, setting up the kit ahead of time.

"Mid-level" staff entered the room.  Mid-level means higher than a nurse, and less than a doctor.  That's harsh, but an easy explanation.  It is a term used for APNs and PAs.  [Advanced Practice Nurses or Physician Assistants.]  It broke so incredibly bad from there that Steve and I only hope to erase the experience from our brains.  A bone marrow biopsy is a very, very invasive procedure.  It involves aspirating, or sucking out, "juice" and marrow (remember the tequila worm?) from the inside of the hip bone.  In pediatric cases, the sternum, or breastbone, is aspirated, God help me, I hope I never, ever have to see that....I digress. 


Steve has now had 5 bone marrow biopsies.  3 were done by our beloved Dr. Tim.  One by....I shall name him Dr. Domer.  All were done very well, not a day at the ballpark, but whatcha gotta do to get it done. 


The APN that handled this biopsy SUCKED THE BIG ONE, figuratively speaking.


Today.  Dear Lord, had this been one of my children, I would have been out of my chair and a battery charge would have been filed against me.  HOW, HOW do you complain about technique, professionalism, and common sense when someone "in charge" has a harpoon jammed into your husband's hip?  Do you say, "um, excuse me, but you are extricating the aspirate with the same movement I use to pull-start our gas lawn mower?"  

Pretty please do be kind to this man, with the broken body, who is SCREAMING AND WRITHING ON THE BED, do you NOT SEE and, more importantly, FEEL THIS?!!!  Do not sneer, "oh, I guess he didn't get any Ativan??!" when I, your reviewer and judge, just hit his PCA full of synthetic heroin mere moments before you jammed him with that wide-gauge needle?  Oh, let's just be one of the men, then, all jovial during the procedure, bare-assed towel-snapping country club locker room behavior that you think you earned with your advanced degree, and laugh and jest while he is fighting the pain, as a man, with six women in the room.  

So I did what I needed to do two hours later.  I dropped the best dime of my life.  She will never touch him again.


On a lighter note.....Steve sounded great on the phone once I got home.  Two of his WONDERFUL nurses both feel he *has* engrafted due to a  late day temp, and I feel the same because the crazy GOUT is back!  Every time he has bottomed out on his WBCs....the gout flares when his whites go back up.


On a personal note:  Thanks to Leslie and Craig, both truly shared their feelings and care with our family tonight with good words and offerings.  I am very humbled by those who reach out to our family in this time of need.  Lutherans ROCK ;-D


Sue