Wednesday, April 27, 2016

SubQ

Sub Q. arrived today.  That is medical jargon for subcutaneous.  Subcutaneous Immune Globulins and it starts tomorrow.

Am I nervous?  Yes. Yes I am.  Is Shelbie nervous?  Yes.  Yes she is.She's had a few mini panic attacks.


I had a conference call for nearly an hour with the specialty pharmacist on Monday. He told me he felt he had gotten misinformation about Shelbie's past medical history.  I inquired, "Why do you think that?"

"Well, I just can't understand how this medical history can be talking about one single person, who is still alive."
"Ahhh, I'm sure it's correct.  Yes, it's quite a history."  I replied.
"Are you sure it really took them over 10 hours to administer IVIG and still she had aseptic meningitis every time?"
"That's right.  Every time."
"That is insane.  No one should have to suffer like that."

He went on to explain the risks involved with Sub Q plasma and how her weekly transfusions will work.  The doctor is starting her out at half the dose she has been getting once a month.  She will get a dosing every week that will transfuse in over 4 hours and two needles that go in her stomach.  So, for four hours, she will have tubing and needles stuck in her gut.  Add that up and we are 6 hours longer per month than getting it intravenously.  I'm not sure how this is going to be better.

Because of her complicated situation, they have to run it extremely slow.  If she gets through 4 weeks without complications they will double her dose and that will mean more than 6 hours of infusion once a week!  Ugh.

The Pharmacist asked me if I was nervous to take this on and without a pause, I said, "Terrified."
 "WHAT?  WHY?  After all you've been through?  You can do this!  You've got this."

I was grateful for his vote of confidence but I'm not sure I have this at all.  The Specialty Pharmacist thinks it is mandatory for a nurse to be here at all times, every time, but I don't think that is correct information.  I kind of think they will cut us loose after a couple of weeks.  He said he will be sending a vial of epinephrine in case she stops breathing!  WHAT?  Oh dear...I pray I don't have to shock her system into breathing but honestly, I wouldn't be surprised.  Since it is plasma from over 20,000 donors, each time can come with different reactions as Shelbie's body reacts with the immunity of all those strangers each month. I'm sure it will be fine.  I don't process things as well as I use to or maybe I use to function on ignorance and that made things seem not so bad.  Or, maybe it's because I don't think right when I'm tired.  Or maybe...it doesn't really matter, it just is what it is.

Speaking of home health, they are sending a hospice company!  That'll give the neighbors something to talk about.  Just to clarify, Shelbie is not on hospice.  They called on Tuesday afternoon just to make sure we knew when to expect them tomorrow.  I asked if the nurse would be here during the entire 4+ hours and she responded that that would be the case.  The nurse is not allowed to leave.  That's weird! What am I suppose to do with a nurse I've never met?

I asked, " So, she's bringing her knitting or what?"
"Well, they just usually do whatever you guys do."
"Really?  So, if we watch 5 hours of Lawrence Welk reruns, she's all in?  Do I have to feed her?  If I am cleaning bathrooms, can I ask her to help? Oh wait, maybe she'll enjoy looking at 23 years of family photos and home videos?"
I thought the nurse on the other end of the phone was going to need some epinephrine she was laughing so hard but I was serious!  For reals...I'm not a social creature and sitting around staring at Shelbie and a stranger for 5 hours gives me all sorts of anxiety.

At dinner, we brainstormed all the ways we could make this transfusion the most awkward for the nurse...The winning suggestion was from Sam who suggested we tell her we want to channel my dead  great aunt and we needed her help.  I'm just kidding...we will play nice.  She will never want to leave! I told the nurse on the phone that we will plan to have a little tea party for this week.  Next week, we will have a craft day and the week after that, I think we'll break out the adult coloring books. For week four, we are going to paint baseboards!  She is going to love it!  See...so much fun!  It's going to be great.  I can hardly wait.

I'll report tomorrow how it actually went...


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3 comments:

  1. Your ideas are very creative! You all make me laugh!

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  2. Okay I was really laughing out loud! I am sitting by myself reading this. I am laughing so hard the dog lifted his lazy head and gave me a dirty look! (despite being mostly deaf!)
    On another note, Not only do you have to go out of the comfort of your 4 walls you have to let a stranger into your 4 walls. I feel for you.

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  3. OH my, Kathy. Yes, you are hilarious in the midst of such serious business. You should get an award.

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