MJ Update: In the hospital yet again

[Guest guest]

Hi all:

This is , sitting here in room 5103, our first roomfrom the hospital stay

that started in November. MJ is hanging in here and tolerating all thatis going

on and of pretty good spirits.

She is tired and worn down from being here for variousreasons but is holding on

with her usual grace. We were in the ER for 8 hrs and she was diagnosed with a

UTI anddehydration and severe weight loss (which we weren’t surprised

aboutanything). We got up to the room atshift change but everyone welcomed MJ

and all the PCA’s helped transfer herinto bed with only a little help from me.

Gotta love that. They are now allapologizing (RT’s, nurses, IV therapy, etc)

because they all mentioned MJ inpassing from Thursday to Monday morning and we

show up Monday at 7pm. How strange is that?

Since showing up GI and pulmo are coming up with lots ofreasons why we are here

except the obvious that going NPO, which is whatprompted MJ to get dehydrated,

as a reason. MJ has been having some weird things going on that are keeping

everyonejumping and scratching their heads, trying to figure things out.

Thankfully, today they started listening to all hercomplaints and now everyone

is on 32 different pages instead of 432, LOL. Just kidding. MJ has been having

a pounding heart rate and pulse, feeling like herheart is going to jump out of

her chest. She had an EKG this morning. Herrate is normal but she has long QT

syndrome which could be related to one ofthe new meds that they had just started

or it could be something else. Another symptom MJ is having is that atrandom

times during the day, she gets a red rash on her chest that starts movingdown

her arms, up her face, and onto her legs, only on the front side. Along with

the rash is a fever…the rash getsworse if the fever goes up, rash goes away if

her temp goes down and stays thesame if the temp stays the same.

Tonight, the IV blew during her antibiotic infusion, butluckily IV therapy came

up quickly and with one stick got her a new one withhardly a sweat. MJ was

getting Zivox and now getting Zosyn andAmikacin. Based on the last two

drugs,we are guessing that MJ once again has that nasty lovely psuedomona that

isresistant to everything except Zosyn and Amikacin. Just lovely, NOT!

Right now, we have no idea how long we will be here. The docs decided to let MJ

eat but not drinktoday and are trying to wean back up to home rate and see how

that allgoes. Lots of work ahead but we areforging on to get out of here ASAP.

Thanks for all your prayers and support during this time and thanks forthe

hospital cards, MJ has gotten about 20 each day. Love and hugs to everyone:

MJ and

Thought for the week: Kindness: I am a kind and loving human being. When I am

kind, Ifeel connected to my spiritual center, to the light of God within. When I

amgracious to someone, I help light up the world. Through even the smallest

actof kindness, the love of God is expressing through me. When I offer my time

and attention, when I offer a compassionateword or a caring touch, I am saying,

" I honor your presence. I acknowledgeand value you. " In that instant of grace,

we each connect with the Divine. Kindness removes all tiredness andstrain. It

lightens my mood and floods my mind and body with joyous energy. Inloving

others, I am doing that which brings me closest to God, for God is love.

MJ Purk

SMA type I+, 22 years old

" How much of being alive, is wanting to be alive? " ~ Northam as Dr.

Proctor on Miami Medical

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