Day 13; Pardon My Vulgarity

We were admitted back to UW Children's 2 days ago, on Friday afternoon.  Abigail had a spinal headache and nausea which we were unable to control at home.  I had made several phone calls to her doctors in the days after discharge.  But the medications and regimen changes only made her sleepy, not less nauseated, and when she was awake, her head was throbbing.  The only time she felt good last week was if she was flat on her back, sleeping, with a cool cloth over her eyes.  As you can imagine, she was not eating or drinking very much.  This contributed to her dehydration.

Once we were admitted, and fluids were started she began to become more alert.  For a while she was what I (as a nurse practitioner, not a mom) would call lethargic.  And that scared me (as a mom who is a nurse practitioner).  Medical professionals do not use the word "lethargic" flippantly.  Also when we first got here there was some question over whether or not her central line was clotted.  It was flushing with no issues, but the nurse in the outpatient setting could not get a blood return or draw any blood from either lumen.  A peripheral IV was necessary to hydrate her while we awaited testing to confirm the PICC line status.  For those who know Abigail, this was very difficult for her.  All of this needle stuff, and the blood... she's very sensitive, even phobic about it.

Luckily after we were admitted and one of the inpatient heme-onc floor nurses assessed the line, it miraculously began working just perfectly.  I was extremely worried about this.  And now I am extremely grateful.  

So our HMO has approved this hospitalization and according to our case manager, they have approved an ambulance transport (non-emergent) to Lurie's Children Hospital in Chicago.  However her doctor here at UW asked we stay until Monday and get her Day 15 chemo here (allegedly also HMO approved).  I felt good about that decision because I think it would be better to meet her new team and get acquainted PRIOR to her receiving therapy from them.  But that's just me feeling out of control.

The weekend has been a real fucking circle-jerk.  Between having a resident who is both very young, and very condescending to Abigail (his patient!), and having seen 3 different attending physicians in a matter of less than 12 hours, there were so many different providers with different plans that eventually my claws came out a little.  Finally last evening around 1800 I saw a different resident and basically tried to give the floor nurse my own orders.  FUCK THIS, I thought.  I shared my unfiltered, raw, emotions with our nurse who agreed with me nearly verbatim.  FUCK THIS.

The nurses are the only people helping me maintain my sanity.

You see we were starting to get the feeling that the doctors were thinking she was doing better and able to be discharged.  But what got us to the point at home which led to her dehydration (her abdominal pain) was not yet fixed at all.  The resident told me "Well we are giving her protonix and prevacid"  Finally I said, "I don't give a shit; it's not working.  When will it work?  And when will we reevaluate our plan of care?"   Or something like that.  If one more person tells me to give it some more time and wait and see, I may be arrested.  Also, I do not need one more fucking person telling me that she needs to eat with her prednisone.  

Yeah.  

I got that.  

I'm still paying about $1,000 a month in student loans in order to prescribe prednisone and tell my patients the same mother fucking thing about prednisone.  Moreover, anyone with a smart phone or any access to Google, will easily come up with the same information about prednisone on a simple web search.

What we were trying to get them to hear is that her stomach hurts too badly to eat, and after she eats, the pain gets even worse.  

I'm going to stop now; I can feel my blood pressure rising and now my stomach hurts.

She is on mostly IV medications, and is on clear liquids (which she hates) and her stomach pain is tolerable.  Chicken broth aggravated the pain though.  I'm frustrated beyond frustration.

The patho/genetic report is final and I have a copy.  We will likely not be staying on study, her genetics came back in a way that requires a very intense treatment plan, not the standard.  I am waiting until we get transferred to our new team before I ask the million questions I have.  I have also tried hard to stay off the internet researching this myself.  

How is Abigail doing?

I'm worried about her.  If you are reading this, my dear Abigail, please stay strong.  Please know that you are loved and cherished by so many more people than you will ever be able to grasp.  The enormity of how your life has changed feels as deep and as wide as the ocean.  And it is.  But you are not alone.  

How am I doing?

I am strong and I am holding on tightly.  I am grateful for anyone and everyone who has sent messages and kindness to our family.  I am also tired.  I'm frustrated.  And I probably need to apologize to that sweet dietitian who was only trying to offer help yesterday.