Wednesday, February 25, 2009

Conundrum:

We're thankful for being able to give Angela a week respite at home away from all the drugs and hospital environment. Reality is, this is only the first quarter of the game...we haven't gotten to 1/2 time yet. The White Coats and the Wolves are at odds with one another in the historic game of life.

Conundrum...
Primary Issue:
Infection, 50% chance the bacterium still remains in her new hip joint, no sign of it now but may still exist. 50% chance it does not. It's a little bug with a serious bite should it latch on to other areas via blood stream.

Concern:
a: could spread to her other hardware which are already compromised and needs replaced.
b: could settle in heart - already compromised with elevated murmur.

Both are high risks - Angela could have serious repercussions if the bacteria is still in her body...no way of knowing for sure. 50%?

Solution: Treat with Antibiotics (anti = against, biotics=a mode of living)

Issue Two:
Angela's body built up anti-bodies to the antibiotics.

Two opposing forces at war, her body the battle ground. It's as if a heated (fever) battle were being fought in an environmentally sensitive area. That area being one which control all the sensitive balances of nature. If any one region is effected, all the others could be effected as well.

Utmost importance: protect, serve and heal her body - her fragile body is doing its best to recover from the stress already incurred.

Possible Solution : Administer new types (2 options) of antibiotics - both are experimental. Daptomycin is next choice, second is unknown to me. The first is naturally found in the soil...perhaps Angela's joy of gardening has a deeper meaning.

Concern:
a: Experimental drugs could be the solution - as Cellcept has been in saving her kidneys in past battles...yea team.
b: Suggested options could have issues - her fragile body may not have what it takes to recover and/or her body reacts to the treatment in a more serious manner than what we recently witnessed.

Issue three:
Will need to start treatment next week. It's a 4-6 week program. Hospital environment not good, she needs to be home. With hip replacement, now the infection, Angela requires constant monitoring and nurturing. In-home nursing can do only so much. They can watch her vitals as the treatment is started. Angel's reaction time could be weeks away - in either direction; a positive reaction or a negative...time will tell.

Concern:
a: Experimental therapy runs amuck.
b: I am unable to provide for her care during this most sensitive time. I have to work out of town to provide for the space and means for her to heal.
c: If we refuse Infectious Disease's choice of course of action (experimental antibiotics) Angela's insurance can drop her...

Conundrum:

a: Do I watch from a distance while others go through the learning curves of how and when to do what while Angela contends to new treatments?
b: Do I give up on making a living out of town and focus solely on creating income from home at risk of loosing our home?

Metaphorical thought:
Is the opposing team actually the 'Wolve (Lupus)-rines' at the U of M and our team actually being the 'hOMe' team?

Possibilities to quire:
U of M Infectious Disease sponsor and support an experimental therapy program using 'Natural antibiotics' [UM study, UC study] found to combat/kill bacteria - what about garlic, sulfur rather than chemicals? Maybe Daptomycin is the golden bullet. It's a shot in the dark.


Solution: Pull the word 'conundrum' out of the dictionary and win the lottery.

Conundrum...

Tuesday, February 24, 2009

Jail Break!

"Freedom!!!!"
My Angel is hOMeward bound!

They're giving Angela a much needed break from all the tender lovin' care...antibiotics and all. Will monitor from our sanctuary via home nursing visits and follow up test first of the week via her new and improved picc line...(wine not included).
All is well in most everyone's eyes, Infectious Disease Dept is reasonably cautious. Will try new, fun and exciting drugs at later date.

In all seriousness, the staff - nursing, house cleaning, to food service to Doctors in diapers and of course our loyal Dr.McCune have all been wonderful, we are grateful beyond words for their care and attention.

Will follow up from the OM front... "What a difference a day makes..."

I'm Drawing Blood...


Next happy go lucky lab tech who flips on the over-head lights at 5:45 a.m. and asks an over-enthusiastic, "How yer doin?" is going to get a syringe in her forehead.

What do you mean, “How yer doin?" Look at the records for gawd sake! - We've been on a 6 day drunk for the past 12 hours, been partying all night wonderin' when someone would come in and flip on the light switch after finally being able to close our eyes for a few mili-seconds.

Now d00gie's flipping a switch because some brain surgeon decides to have a fire alarm drill on the floor above us at 6:42, right when I was about to catch a brief shut eye before the entourage of white coats and clipboards make their rounds with their eager..."How yer doin's"?

Oh wait! Now we just had a new doctor come in asking the award winning question, "With having Lupus, what are your symptoms?" Brilliant!!! Let's have another party while we discuss the volumes of records accumulated in Angela's library of symptoms and her enormous amount of patience with you doctors who are still walking around in diapers!

Good thing is - Angela was able to feed the vampire without a prick, she was able to get up and pee by herself with her feet on the ground and her temperature is well below my current boiling point.

There, got it out of my system. Think I'll close my eyes and envision a most positive way to booby trap the door and light switch for the next beaming "how yer doin?" type individual who dares to enter.

No, second thought...better not...it might be the guy with coffee...where's the IV team when you need them?

(Angela looks good, temp is norm, rash has faded and about ready to eat...wait, is that a Paczki? A 1200 calorie raspberry filled donut and an empty bowl of...yuck...never mind. Angela's doing great! ...everything else seems to be a freakin comedy this morning)

Relief

My sweet sleepy Angel was just carted off to xray to insure her new double barreled picc line was placed correctly. Her fevers have finally subsided and no more poking and prodding for veins - now easy access for anything they need to put in or take out. She had a look of relief as soon as the line was inserted.

She looks like she has a sunburned face from today's excitement but with a day of rest on the early horizon she'll be back to her calm. All is well...no worries...made it through the storm.

We're putting a Do Not Disturb the Disturbed sign on the door upon her return.

Monday, February 23, 2009

Spiking temps, leg/knee pain constant at this point, way-too prominent butterfly rash. Dosed with Oxycodone and Dialauded she's still coherent and manages to say how grateful and positive she is from everyone's concern and support. She's getting ready to get a new pic line so not to have to go through anymore IV's. Spirits are up, care is premium and a new day is around the corner.

Through this hospital stay we've been listening to "Lamentation" by an artist named Tunde Jegede, over and over...it's been a blessing. I'm sharing this only because the music is calming, more so than the drugs - for Angela, for me and for those who enter our space. Isn't music supposed to sooth the savage beast? Lupus has surely raised it's head with a howl this go around but it continues to retreat with our positive vibrations and Angela and her caretakers kind hearts... the music helps. I recommend it to all...Just a tangent thought while there is a lull...

Can't help but feel we are blessed to have the care we have. The doctor who was on shift when Angela nose-dived called from his home - his night off, checking in to see how she's doing. The sounds people make on this floor at night are discomforting, I walk down the hall with my blinders on only to look forward and out of respect to those who are suffering. Our door is shut to our private room, the music is on with lights dimmed and a trust in the air that all will be well...for us...and knowing there is always something to be grateful for.

Rounding the turn...pic line should be on its way.

...not having fun right now

Wish I had better news...she was doing so well...
They tried the antibiotics again...downward spiral. Body rejecting them, overwhelming her pain threshold and nervous system, temp spiking. She refuses anymore antibiotics and drugs other than for pain, had them pull the IV out. No more tests, experiments, blood draws or infusions...for now. Ready to go home...need sane healing environment.

Gut feeling: Infectious Disease dept overly aggressive with antibiotics to fight a bacterial culture that showed up in surgical specimens and not in any of the following blood samples. Waldo is not here. Time for Angela to go home...enough.

Here through the eve...will update...

Sunday, February 22, 2009

Day of Rest


Angela seems to have been sleeping most of the day, hot date last night wore her out.

Good news: The infection is not showing up in any of the numerous cultures taken with the exception of her hip, so the bug is isolated for now. White coats say the fever started due to the infection but it's been determined the fever spikes are due to Angela being allergic to the antibiotics especially the mega doses they infused her with at first to knock out the infection. Her steroid dose will be small, 30mg, out of necessity - no adrenals, plus 'some' steroids will help coax the lupus away rather than carpet bombing the wolfs lair so to speak...ahem...

Angela's body had enough of this roller coaster ride, her arms are dotted with shrinking tapped and scared veins, bruised with punctured vessels from all the blood letting and IV's. Amazingly her hip is healing rapidly and continues to impress even the surgeon with her recovery rate. Now to keep the Lupus at bay.

Looks like my Angel will be able to come home first part of the week so optimism is shining. We'll have to keep her hooked up to the bottle, this one being a pharmaceutical and not chardonnay. The wine still seems a better option.

Saturday, February 21, 2009

Date Night

Wow, a holiday from temperature spikes and skin inflammations, IV's, teams of white coats making their clipboard rounds... happy day. The antibiotics seem to be the culprits, well, more so the Lupus reacting to the antibiotics or... Angela just adding another allergen to her long list of med's she is unable to take. She's had a respite for a few hours from pokes, prods, jabs and needles...what veins she has left sigh a loud relief.

Taking advantage of Angela's steroid buzz we went out on a date touring the hospital on a quiet snowy Saturday night. We were on a covert mission...strategically placing "Create Joy Now" stickers throughout the hospital for people to take, or at least contemplate. It was actually pretty funny. Angela makes a terrible undercover operative. She was afraid we'd get busted - for leaving free stickers on tables, poster boards and at public sitting areas.

I thought it would make a great article, "Gimp Couple Arrested for Spreading a Message of Joy in Hospital".

Saturday Update...

Hip infection is no longer a priority. Lupus has kicked in... reacting to the infection and to all the antibiotics. In attempt to stop the Lupus in it's tracks - they're dosing her with steroids......................................
Will continue with antibiotics somehow, someway..................................


For lack of expressing how I am truly feeling at the moment:

"Scientists claim that they have achieved landmark success with an experimental approach, using a patient's own stem cells, to fight the life-threatening autoimmune disease lupus. [link]"

Advocate Stem Cell Research.
Focus on the Positive
Keep your Angel Light on...

d;(


It's been another roller coaster day. Gist is, Angela has an infection in her hip, pre-existing as far as the white-coats can tell. Opening her up and stirring up the tissues in or around the failed hip socket etc got the bug excited. It's a fairly weak strain of bacterium, similar to 'acne' but in her case it acts like a zit on steroids...hmmm, wonder how that happened. Her body freaks out trying to rid it like a teen with a pimple on prom night.

To make things more interesting...her body doesn't like the antibiotics. Fevers spike, vitals go nuts, rash and welts break out trying to rid her of the stuff that is trying to get rid of the bug. White coats are perplexed but on it. She may be in here for a while until they can control the infection with something her body won't reject - stop the beastie from spreading to her susceptible joints and high tech hardware.

I have the solution...they won't listen to me though, I'm the one who's willing to sleep in the shower. They gave me a lazy boy for the night, I'm here now gazing at my slightly snoring beauty...guess I skerred 'em. Happy to be here though....at least they could hook me up...geez

Thursday, February 19, 2009

Angel Status:
Up in spirits. Makes a heartfelt connection with all whom enter. Gives blood willingly. Same-O Angela. Her fan club is growing rapidly. She's shuffling around with a stronger wiggle, good to see, fun to watch.
Teams of doctors; Rume's (Rhumetologists), Exterminators (Infectious Disease) and now Detectives (researchers) all working together trying to figure out why her temperature spikes and subsides as it does, 98. something to 102 and back down. Vitals go wacky then recover, unstable... They're all looking for Waldo...the mystery bacterium.

Rume's are concerned about the multi mega doses of antibiotics...lupus flare potential.
Exterminators worried about blood line infection and/or contamination from a wide variety of possible sources... not wanting to dig around for it. Now the detectives are looking at every aspect of her most recent care. I think all the questioning is valid but what a brain drain on Angela while she's working on getting her health together. She should wear a "HI, I am Angela" sticker with a list of all the answers to all the redundant questions.

I haven't been as available as I wish. Drives me crazy. I drive her batty. The continuous flow of white coats with clipboards visiting her are amazed to hear of all the new parts Angela has in her. Next implant...USB port for her Ipod, that will empress 'em.

d00g status:
Nut case. Button pusher. Goes for the throat without notice. Freaked out, tweaked out - all under a soft candy coated shell. Feeling blessed to have so many people of all makes and models supporting Angela and I along the journey; doctors, nurses, family, friends, clients, coworkers and all in between. Feeling grateful for all the blessings that make life worth livin'...there's so many in every moment... thanks for teaching me that one my Angel.

Back again

Angela is back in the hospital,
Complications arose with a significant fever and other unfamiliar symptoms. They are concerned about infection in her blood supply. Infectious Disease and her Lupus Doc are on it. More info tomorrow... She has her own room, no cot for me, wouldn't let me sleep in the shower.

Angela sent me home...rough day...sigh....driving her nuts.

Wednesday, February 18, 2009

back in hospital for the weekend or longer??

heading back in tonight. spiked a fever and do not what is going on. will keep you posted as we know anything probably not until monday.. please don't email yet i will not have computer. doug will be with me. love and positive thoughts...................angela

Monday, February 16, 2009

another monday

Time flies when you are having fun. It has been two weeks since surgery and I am now in a routine with the home health aides, IV, labs etc. Tomorrow I meet the surgeon and the Infectious Disease Dr. to see what is next. I am hoping they have the answers. No real news to report. Your cards, calls, visits, food and other gifts have been wonderful. It is great to know you are loved. If you are reading this you are. I wonder what people do who are totally alone and with no help or little medical care? I know what they do...........nothing. That makes me sad and feel like a wimp when I complain, so chin up and all good thoughts.

Oh my nieces and sister made a beautiful prayer-meditation shawl. Wraps me in healing energy. They are so crafty and talented it amazes me. One of these days I will take up knitting again. Don't worry I will not send you all really long horribly uneven scarves for thank you's. I envy those who are good with their hands. Mine just want to dig in the garden !!!

Enjoy the day. Sun is shining here !!!

Thursday, February 12, 2009

Reality hits

Today I faced the reality of what my life will be like over the next 6-12 weeks plus. Still positive and grateful for all the blessings in life but being in bed 90%, having to avoid any stress on joints and bones which seem to be worse(pain increase), wearing the limiting and not so comfy brace, IV infusions every 12 hours which last for @ 3 hours and all the home health care is a blessing yet I still miss being "normal". My other bones-joints seem to be worse and this hip will take a very long time to heal. I am on even stricter limitations and restrictions now. The infection and advanced AVN is upsetting. I spend 90% down on my "hospital bed chaise", but Doug re-arragned the room so it works much better and is easier access than any other room. I guess we are getting the systems down. If the other bone-joints can hang in there during this healing time I will be much more at ease. If my sanity holds up everyone will be happy. The Dr. limited my weight bearing activities on new hip because it is so fragile now which puts more pressure on knees and new shoulder (ouchy) which is where the IV port is. I feel like a mess. Loss of blood, infection, constipation and sleep deprivation are contributing. I can sleep for 1-2 hours then I have to move about and so I nap all day. Hey it sounds like vacation right? Thank you for letting me vent and I have learned that every day is a new day with new adventures. I will do my best to keep you up to date. I am not so good on the phone now and it seems when people call I am either asleep, in the bath or on IV. Doug's really needing to focus on this project so if he does not answer it means he is working or care taking. Emailing is best.

I send you all my love and gratitude.

Monday, February 9, 2009

A little bad news

I just got a call from infectious disease and they said a bacteria has been found on a tissue and metal sample from the old prosthesis. Usually they are able to tell during surgery but the culture grew and it is still not fully cultured yet. I have to go into hospital for a Pick Line to run IV antibiotics everyday or so for 6 weeks. I will be unable to leave the house and will be under stricter care and watch. Immune system challenged enough. I should be home tomorrow afternoon if all goes well, which it will. Bummer but we will get through it. Nurses and PT will have to come for 6 weeks at least. Hold off on visits until I know what the deal is. It is not contagious but they have to follow strict protocol for my protection and others. Common to find this in old prosthetics and replacements.

Other than that and low energy-blood I am doing great.

Larry I got your massage and thank you !!! You get settled in your new home and we will plan a visit for spring. I have a few friends staying after Doug leaves and they plan to stay in intervals and help put along with family here of course. I have plenty of support!!!

Love,
Angela

Three Months :( wearing brace

Oh My !! I just found out I have to wear the brace for three months for sure and need to be even more cautious than first expected. I go to Orthotics tomorrow for them to fine tune the prosthetic. It is not fitting comfortably and bruising. I am grateful for saving the leg-hip but I did not expect this. Oh well, rolling with the punches baby. I will just need a little extra help with shopping, chores, errands etc. I am lucky it is winter and not summer !!

All is well. I am starting to get a bit bored so visits are welcome and I truly want to thank everyone for all your thoughts and such. I love reading your emails and staying connected. Time for a nap now !!!

Love
Angela

Saturday, February 7, 2009

Valentines day is Coming


Fun hearts and kisses designs for cards and more. Always fun to surprise your loves with a gift of love!!!!

Thank you

Thank you all for your warm wishes and prayers. It is always great to know how much love flows. I am sending it back at you.

All is good. I feel very tender today and sore. Usual after the first few days to begin feeling the scar tissue and bruising. I have a little more energy than yesterday. Blood seems to be beefing up so to speak. The sponge bath helped. I am wearing new PJ's from dad with green frogs against a blue sateen. Very cozy and fits well with the brace.

I am thinking of all my friends and family who are affected by the economy, health issues, winter blues or other stresses in their lives and I want them to know they are in my heart. I continue to hold the light in my heart for you each and every one. remember to breath and feel calm and breath out with a smile in the knowing all is perfect just as it is. Trust in that one thing no matter how stressful it seems or challenging it may be. I find the greatest peace after overcoming a time of challenge.

Love and Peace
Angela

Oh, Thank you wonderful husband for all your care and sweetness. I adore you and feel so very blessed and give thanks for you every five seconds. Do take care of you too !!! You have a large good karma account.

Friday, February 6, 2009

baby it's warm inside

Hello from sunny dining room central. I have tunes, laptop, phone, walkie talkie, food, water, birds to watch, reading material, TV and a chaise on which to lounge while gazing into the snowy woods. It is a heat wave at 30 degrees.

Slow and restful day planned for next few days. I am asking visitors to hold off till next week when I am stronger and more myself. I am pooped from low blood and soreness of surgery. I do not know how some parts hurt but they do. Still having a time with sleeping in one place with a big foam between legs. I will be happy when I can turn over or move a bit. Shower day??? Well sponge bath at least. PT said I am doing the best she has seen a hip replacement do. The brace is helping and I am not worried about dislocating. The only problem is I can not do as much PT. That could slow down progress but hey, I have a leg and hip !!!! As soon as I can get in the pool the real work begins. The exercises they have me doing are a snap. That is all to report for now.

My phone is with me. feel free to call after 10 am. If I do not answer i am sleeping. Hugs