Friday, September 12, 2014

Entyvio, EV-D68, & NINE ELEVEN Thoughts


I started this on the Eve of 9-11

First Etyvio symptoms after three days

Depending on whether you have a kid in school and football may make the symptoms different...

1. Entyvio

- Extreme relief the school week is over, J. is getting his routine down (as am I, sorta) the fact he didn't have math on Thursday could have contributed to this glowing feeling.

- Day after the infusion I was able to blog, hand wash some football socks (kidding- but I feel I have to do extra special stuff to his clothes that I don't even do to mine! ), do some laundry, get some exercise, etc. By exercise I mean doing normally day to day stuff healthy people do. Like put their clothes on, get ready for the day, walk up and down stairs, through parking lots when there is no spot to park- things like that. Oh, and stretch.

- Day after that I went to a hardware store and bought some nails and used a hammer to drive in a couple of them. *the packet says not to use tools afterward if you are dizzy. ha, heh... hmmm...

- OK! next thing. MIDDLE OF THE NIGHT NAUSEA.  Now this is curious. In the middle of the night I am nauseated. And I am right now.

- After said trip to small grocer's and hardware store I couldn't unload my groceries. (take ice and cooler, Readers.) So J. did that after school.

- Third Day: Lower Back Pain. Or just back pain. Sat on bed. Became stuck to bed like a fly to fly paper. Pain got worse. I wanted to cry. Still managed to talk to J. about all kinds of stuff. Kid was happy cause they had some award for winning something for football and got a Wing Party but it turned out to be pizza.

- Ate Butterscotch pudding with J. , read some more with him- We are reading a mystery book by Korman, and then the book: Out of My Mind. Enjoy both!

2. Nine Eleven
It is easy to forget the devastation, sacrifices since then made in behalf of that day.

When J. got home from school I asked what they did for the 9-11 date.  He told me about the lack of time, etc. And so we headed to you-tube. It was a good thing cause I needed to commemorate the day better than I had and watching some clips, seeing some families that are still grieving to this day made me

When we had fam prayer we had our moment of respect.
3. Enterovirus D68 or zorrovirus d sixty something. Why do these viruses have to have such hard to pronounce names (for kids) ? Why not treat them like the hurricanes and just assign a basic name?


Like the Sara Virus. Lots easier. And if ya still want to add a number just use Zeros. We can't keep up with the 100 different strains. And it wasn't re-assuring when I read the news articles or watched News Channels in Utah tell there were some 100 kids with it and some in ICU within 5 hours of getting the nice email.
And it doesn't help that if you are an asthma sufferer, you are more at risk. I can't even get the shots for asthma cause they can interact with all the new meds I have been on. How fair is that?  
Before this hit Idaho and was somewhere near CO. I encouraged J. to
"feel free to wash your hands periodically through out the school day. Especially before lunch, blah, blee bluh. " (the sound of my voice and pre-cautionary advice as it is drowned out by J's parent filtering system.
THEN I got an email from my local hospital telling me of confirmed cases. So, now, when J. gets home I tell him to remove the suit EBOLA attending doctor's wear, and go ahead and throw it in the wash. On Scalding Hot.

No more waiting until a visible sign of dirt, ketchup, etc. on his jumper this time!
In fact, I am tempted to RE-LABEL his school shirts/shorts  and swap them for the "older, more worn" shirts dubbed:
Yup, he may as well save those nice shirts for playing outside and doing chores inside and outside and let the worn shirts go into germ haven- a.k.a. : school.
Because I don't want him wearing the new shrunk shirts *washed on Scalding Hot* to school! No! Wear the tiny, old shrunk shirts!

(We are all gonna have to move into little houses like these due to EBOLA and that other virus.)
As someone who enjoys laundry and dreams of a Martha Stewart Laundry Room that is spacious with lots of windows, I like a challenge. I may make a fuss when J. rubs his hands on his shirt or wears his white undershirts to work in the mud but, really, I like a challenge.
I have a whole kit assigned for getting out stains.
Back to the virus. While reading about what to watch for in your kid
- if they turn blue in the face trying to breath
-if they are wheezing and can't get "enough air"
- if you find them passed out : Call 911.

(Are these two friends? Look at that Palm tree behind them. Hmm. Paradise I guess.)
I came across some other valuable information for freaking out people with a dumped immune system. Ya know those side bars that do ads? Well they decided to put up some horrifying statistics that ya just don't want to read.
For instance. They showed a hospital hallway and said:
 "C. Diff. has probably been admitted to all of these rooms." 
  (can you picture a person in a wheelchair backing themselves outta there?)
 Clostridium Difficile resides in all of our guts but if you are elderly, on chemo or other immune suppressing drugs, and take an anti-biotic; the good flora in your gut can be overtaken by the  C. Diff.  It gives you major D, and ends up killing you if you are an unlucky person or part of that group most at risk. Otherwise you take a big gun Antibiotic called VANCONyacin through an IV so it passes your gut and finally fight it off after two years. Then you can't take any anti-biotics unless you are super desperate.

(you gotta feel like E.T. at this point)
Like, life and death desperate.
Another catchy ad gave some ER room stats about the curtains that separate you and the weird people next to you. Too bad these aren't sound proof... Did you know these aren't washed until a visible sign of dirt? Yup. So MRSA, STAPH, and old man B.O. are hanging onto that while you are there.
And they don't clean the waiting room chairs off that much so tons of cross contamination going on.
Another horrifying stat that I could have done without:
Half the beds in hospitals carry Bac. ugh....
(White Boots.... Good Idea)
It made me feel validated for past visits when I brought my cleaning kit, mop and bucket to the hospital when I  had to be admitted. (me, trying to be like Mark Twain and lie.)
Once in a room I reach for the Industrial Strength cleaner wipes, no lie,
 (use gloves, Readers! that stuff is serious business. It can melt your hands. Padre's are pretty rough and can probably handle them for wipes but the rest of the population can't! And it has some link to cancer or something.)

and I start wiping down the bed side rails,
phone, remote control, etc. The nurses love an independent patient. So does the janitor lady that I see there. She is so dedicated. I pull back the EBOLA mask and say:

"Don't worry about the bathroom! I got it or I will when I get out of bed to use the bathroom. "
So while in the bathroom just use that hand rail to steady ya when you mop with the mop you brought from home. This can be chucked with the rest of the bio-hazard material.
Nurses also are impressed when I empty my own "bucket" and write on the Dry Erase Board how much liquid output I have put out.
This is another one of my pre-cautionary steps to keep the nurses from contaminating my room as they hustle from room to room. Actually, I am kidding. I have had to do it because when it starts to over flow, it isn't hygienically pleasing and nurses are super busy as they are understaffed on whatever floor you are on.

Apparently they are selling these puppies for whole sale. Lovely.

Nurses have a tough gig. Sure they get paid well but who wants to empty your bucket after ten hours on the night shift? Exactly. Only Mother Theresa.
Which is why I have to give the nurses a break after my infusion on Monday. I had read online that I would have a "drip of Entyvio" for 30 minutes and then have to be observed for two hours.

The minute the Ebola outfitted nurse removed the needle I was "good to go." she said.

 No I don't have Ebola or the virus running rampant. The protocol for the med means that they have to dress up and cover their faces so they don't touch your medication.

"I can go?"

Nurse # 3 - "Yeh, we have a lot of success with this med."

ME: "It just came out."

HER: "Well, that type of med." (referring, I guess, to gene modulating biologics.)

" Well, that's good cause I gotta get home to my son who is done with school soon. Can I get the pamphlet to the med?" I thought since I was there I could get the real deal tissue paper handout for my filing cabinet so I asked a nurse. Happened to be one that had done the dirty work.

"Sure!" she said kindly.

As I was sitting there putting pressure on my blown vein, nurse # 2 said:

"Can I help you?" 

At first I looked side to side for someone that looked like they were the ones being talked to but since I was in between two unclean curtains (by the one site's suggestion) I realized the intimidating woman was talking to me.

Due to her look I initially stammered but recovered and said confidently.

"I am being helped." and I tried to whistle a tune while I waited so I looked busy.

"You're done." she said crisply in a way one might feel if you were being dropped off at your house and all they did was slow down, open the door, and roll ya out.

Readers, this is where I said even more confidently:

 "I am waiting for the nurse to get me the med info. You are right, I am finished and will leave when she gets back. Do you want me to sit somewhere else?

By this point there were witnesses and she said she'd asked me if I was done. This is why I'd love one of those Go-Pro Cams.

The nurse came back and said she printed some info off the Internet for me, handed me the paper work and I left. I exited a different door and had to pass by the ER. One of the nurse's came out and said real nice, like good friends nice:
"Hey, Manda."

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