Thursday, April 28, 2016

The Nurse

Today was our first, in home transfusion, and...the nurse?

Two nurses came.  We're a handful.  In fact, one nurse was actually the owner of the Hospice company.  She didn't stay the whole time, just until we got all the paperwork done, blood draws complete and training on the pump, but the nurse we will have for a couple more weeks, or more, stayed all afternoon. The transfusion itself ended up taking nearly 5 hours but she was here 6 hours!!!  Much longer than they projected it would take. Both nurses were great.

Our regular nurse is wonderful!  It's so strange to me how the smallest detail seems to be taken care of sometimes, even down to the nurse that will now be spending the afternoons with us once a week.  Without a doubt, she was sent from Heaven.  I asked her if she was nervous going into a new home and she said she was a little.  I said I was a little nervous too having her here.  I even told her about all the little plans we had for her, including the channeling of my great dead aunt.  She laughed.  In fact, the nurse who called to schedule with us told her all the things I had asked on the phone!  I'm a dork.  I guess it's no secret why I'm still single!

Our nurse has only been in the area a year.  She was a single mom in Arkansas but moved to a nearby city after meeting her new husband.  Shelbie knew they would get along when she brought her 32 ounce Diet Coke with her!   She loves the same TV shows that Shelbie likes and loves photography, crafts...she seems like she could be part of the family!  She even has a special needs daughter. She really is so nice and I feel relieved.  She is the perfect fit for us.  It wasn't at all awkward.  Once we had Shelbie situated and had fallen asleep from the premeds, we sat and worked.  I did my work and she got caught up on charts.  Of course Shelbie had to have vitals every 30 minutes so there wasn't that much down time.

The whole experience was much different than I had imagined it would be.  Some things were better, some were not.  I was totally relieved to have the nurses here today.  I think I could do this just fine alone if I have to.  Not the blood draw of course...but getting the plasma drawn, primed and set up for infusion.

Now...the bad news!   Dr. G texted me this morning to tell me that Shelbie's IgG level was completely normal.  3 weeks past due, even from the last IVIG.  He was expecting numbers more like 200 since she gets sick every single month, a week before she is due for IVIG.  I'm not sure if this is just an outlier or a true number.  At any rate, it definitely raises some red flags that this is not CVID or at least, not a common form of it.  And the big question...why is she sick but immune numbers seem okay?  Where do we go now?  Dr. G had not real answers.  I told him this news felt very discouraging and maybe we are barking up the wrong tree.  He felt like maybe they need to rethink this diagnosis as well.

The other wrench is that one of the tests that the Oncologist did last week, came back high; representative of organ and tissue damage guessed it...Lymphoma.  What a puzzle.  I'm so over the back and forth.  I don't think they are considering cancer again right now, it's just so weird to me that some tests still keep coming back suspicious.

So...we are no further along and in fact, it feels incredibly depressing.   I can't even speculate really.  I'm going to have to do some research and try to understand what this could mean.

Tonight, her abdomen is swollen from the needles and hives are starting.  She is also feeling much sicker tonight. I'm hoping for the best but it's not easy.

Oh...During the first little bit, Shelbie took the nurses down to see her studio and while they talked about photography, Shelbie asked if she could offer free family photographs to people on hospice.  I was so surprised that she did that but it will be a wonderful thing.  It felt like this whole day was meant to be.  I know that sounds weird but somehow...everything is right with our world.  I hope that they will take her up on this.  It would be such a great thing for Shelbie to do.


1 comment:

  1. Glad for the tende mercies of your day. You are so hilarious!