Saturday, February 14, 2009

Happy ♥ Day, Happy B~Day 2 Me & We are happily home =)

Hey Hey my blog loves!

So lets rewind to Monday night

Monday 2/09/09 around 7:30ish
Michael was at karate and doing so so a little out of breath but not to bad.. class went on and he started getting really out of breath.. well even tho Michael has cf he does not usually get winded so what I think happend is.. He lost his breath and paniced thus causing a panic attack, so needless to say he got scared and knew he needed to go see Sindel. He had been doing the inhaled colistin ( previously blogged ) but we just was not seeing the result we wanted. We went to bed and crackled and coughed all night.

Tuesday 02/10/09
Woke up and called Sindels nurse Rachael.. Mistake #1.. new lady answering the phone at Pulmonary Associates.. Here is our phone conversation

New Lady: Pulmonary Asscoiates can I help you?
Kellee: Hey can I please speak with Rachael.
N.L. : Are you a patient
K : No mam its reguarding Michael Perkins (all you cf people know your pulmonary place knows you by name.)
N.L. O Ok well you can leave a message she dosent take direct calls.
K: This is for a cystic patient and we need to come in today.
N.L.: Theres no way you can see Sindel today hes booked for 2 months.
K: (slightly frustrated) Are you new?
N.L.: Yes
K: Oh Ok well cf patients speak to Rachael and get worked in when needed.
N.L. : Im not sure it works that way hold please.

24 Mins later
Rachael: Ahh i am so sorry Kellee shes new.
K: Yes I could tell, when can M come in?
R: 1:10 it may be a little longer than normal we are having allergy shots today and have 19 new patients for this am.
K: No problem see you at 1

get showers do morning treatments and head to Dr. Sindels.
Mistake #2 Another new CNA
New CNA: (NL2) Michael Perkins.. step on the scales please.. Step here for Height.. Sit here for blood pressure.
Weight good.. according to NL2 M HAS SHRUNK 2 FEET! I start to twitch knowing I have just met idiot #2 for the day.
NL2 takes blood pressure.. 91/54.. impossible #2 Michael has HIGH bp.. laa dee daa we go to pft's... they suck and we go to a room. I find Rachael and ask for a bp check.. it was 132/80 (thanks I knew she was a idiot) ((Oh yea NL2 helped me prove that she was an idiot by not knowing you put a nose piece on to blow for your pft's.))
We waited forever to see Sindel, we played all the games in the highlight books, played wheres waldo and did a crossword puzzle. So he finally came in looked at the x~ray (normal) then talked to us about what was going on.. He finally said "so Im going to put you in and start some iv's".. Michael started squirming..
Michael : well can I do home iv's
Sindel: Do you have a home health care?
M: No mine closed
S: Well then no
M: But you see Kellee's B~Day is the 12th
S: Well Ill put you in and let the hosp. case worker set you up with a new home health agency.
M: (looks at me in a plea of help)
Kellee: WE HAVE TO GO IN.. HEALTH BEFORE BIRTHDAY MICHAEL! We will go and leave for home iv's on Friday and do my B~day and V~day on sat.
M: uhh ok

Come home leave a short post on here.. pack some clothes and head to the hosp.
Arrive go to admitting.. Mistake #3 (Sindel ALWAYS puts that his pts go to the 4300's)
We got put on the 4200's MISTAKE MISTAKE MISTAKE!!!

(I dont know about you guys but.. Michael and I have our little set of rules at the hosp.)
Rule 1.. dont lower M's bed
Rule 2.. dont flip on the overhead light at 3 in the am
Rule 3.. Follow Sindels orderes EXACTLY (he writes them for a reason)
Now the 4300 nurses are great, they know all the cfers and how they work. They get meal tickets to go eat whenever they want and however much they want.
But no we have the 4200 nurses!

Wednesday 02/11/09

so of course its midnight before they have his stuff and get him hooked up and let us know they cant put pancrease pills by his bed (even tho thats doctors orders and they have been doing it the past 6 years), he has to call every time he needs them (ok so that would be fine if when he called they brought them.. but no it takes the 2 1/2 hours to bring them and by that time they dont serve there purpose) so I pitch fit #1.. well we attempt to go to bed Ha!!! 3 am (mistake #1 for this new day) Mr. Perkins Im gonna pull your trash.. big light on! (oh dear) Michael looses his mind (michael is a very grumpy person when A. he gets woke up and B. when hes sick) he all but strangles the cna and we go back to bed well from 3:30 - 7:00 we actually got some sleep. Short lived.. Sindel came in and so did the nurse to hook him up.. well as most cfers do.. he woke up hungry ate his breakfast and wanted more so he went an asked for a meal ticket.. Mistake #2 The head nurse, mind you this is the "head" nurse tells M they dont give meal slips.
M: Im a cf pt. I get them around the clock
H.N: (nasty, hand on hip and head bobbing almost yelling) I dont care what you are I run this shift.

I exploded!!!! (fit # 1 2 3 4 5 6 7) I called every supervisor in that hospital and had 3 in my room in the next 5 mins. along with Dr. Sindel (who has an awesome rep. for chewing out nurses when things are not done correctly)Needless to say I really really really showed my butt but I did however get things fixed and we got moved to 4300's (just like in Sindels orders)

So now that we were "home in the hospital" in 4317 with our awesome nurses things were perfect!!



Got some good treatments

meal tickets and a fairly ok night with some sleep.

Thursday 02/12/09
for some reason my B~day is my fav. day ever, it always has been!
So anywho Michael woke me with flowers and breakfast at 6..Photobucket
we talked to Sindel and went back to bed until 10. My dear friend Wes brought us foosackleys for lunch and we hung out with 2 of the other cfers that were in (Heather & Adam)Photobucket



& (Adam & Amiee)
We were all in our room when Wes came in with a cake and a singing candle!! So all in all it was an ok day (they only reason it was not great is b/c M felt pretty bad =(. )


Friday 02/13/09
Yay come home day. Sindel came in and told us we could go home and do 11 more days of iv's.. the home health people brought us the meds at 3 and we were discharged!!


( dont be sad Angie we will be back )

We got home and my friend Jason had cooked me a cake..


poor thing, so I had to laugh at the cake then he pulled out a beautiful red velvet 4 layer cake.. I asked him how did he make that one so pretty but had such a hard time with the 1st one.. he confessed his mom did the red velvet for me lol.. Thanks Mrs. Linda!! Moving right along we did night iv's and slept nicely in "our" bed =)

So here we are today 02/14/09


not much so far but today has been spectacular!! Michael feels some better, I CLEANED my house and it smells great, got to sterlize the Eflow


oh and the best part.. I woke up all snuggled up with my Michael!! Thank you God for another day =)



  1. After reading this I am so glad we didn't go to the hospital! and truely I am sorry you had to as well. Honestly, It looked like you had a whole lot of fun though. Next time we go in I'm going to sneek around snaping pictures of the nurses just for the heck of it!

    Thanks for the info on the vest and I'm sure Josh will hate it too! Until now all his CF fun has been in his tummy and liver so I have no idea what a port is.... please inlighten me=)

    How does Micheal keep so much wieght on?? he doesn't even look like he has CF in the pictures. I have the hardest time with Josh yesterday we found out he lost 3 pounds.

  2. So glad you guys are home and can sleep in your own bed:)
    Sorry you had such a hard time with the New Ladies:( Glad you spoke up and got what you wanted.