In Again.....

The home health nurse called me Friday afternoon and said Marty had a lot of bacteria in her urine so we started her on our tried and true antibiotic.  They called Monday afternoon and said, nope, that particular antibiotic won’t kill the bug, I said the nicest thing I could say, “Well crap.”  I have better words, more powerful words at my disposal but I showed restraint. 

On Tuesday we checked into Providence Hospital where we have a room with a view.  Hey, don’t hate, a room with a view in the hospital is primo stuff.

The plan is to attack this Pseudomonas aeruginosa bacterium with Nebcin, a powerful antibiotic,  because Nebcin is the best IV antibiotic to smoke this bug.  We did this same thing in June of this year but used a different antibiotic.

Marty, as one would imagine, is not completely on board with this event.  She says, “I don’t feel bad, why am I here?”  I say, “Because we love you and hate pseudomonas aeruginosa.”

The truth is I was surprised at both of these diagnoses.  Marty seemed to feel fine and was not showing her usual symptoms of an infection.  She was showing some signs of a fatigue but all other signs pointed to….well nothing, that’s why we like having the home health nurse come by regularly to retrieve some urine.

By all accounts there were a lot of the evil bacteria in the pee and the lack of sensitivity of it to oral antibiotics Marty can take is a hugely complicating factor.  Thank God for a variety of bacteria killers.

Marty is hanging in there occasionally pouting, sleeping, watching TV and dealing with the comings and goings of various medical providers at all hours of the day and night.  She has been on a “I’m not getting out of bed” mode until I finally said yes you are and guess what, she kind of liked getting up and letting her back and bed get a little air.

We wheeled around the floor two or three times, looked out the window and found one spot where she could sit in the sun for just a few minutes.  We went back in the room and Marty stayed in her chair, talked with daughter Erin on the phone and watched Ellen, she loves Ellen.

With luck the urine sample they took today will be clean and clear and Great and Wise will spring us from hospital captivity on Saturday.  Can you imagine how good a real shower will feel after five days in the hospital?

We still plan on Thanksgiving at the lake with our whole family.  Pure pee should have arrived by then and we won’t have to worry about that particular ailment for awhile, I like not worrying about someone else’s pee.

Marty continues to do what she does which is live, accept, make new friends and have an impact on an ever expanding universe of people.  I know I’m not particularly objective but I believe the people she contacts, the lives she touches are always enriched.  We just get to do that with different people when she’s in the hospital.

Here’s to getting the hell out of here soon.

She's Doing Five to Seven With No Chance of Peerole

Damn it.  We are back in the hospital.  Since Tuesday, damn it.

I never said it but I thought it.  I was driving and against my better judgment I thought it.  It was a fleeting thought but there it was, me thinking everything was normal, me basking in the glory of not worrying about the next shoe to drop.  That was Monday; I was riding high tempting fate.

Marty gets urinary tract infections, it happens with some regularity and it is part and parcel of her strokes.  To combat her propensity for UTIs Marty takes a daily prophylactic antibiotic that has helped but not completely stopped the infections.  UTIs can be debilitating, causing some pain, causing a general funky feeling and even causing a little cognitive impairment.  That’s why we take these infections seriously and react quickly.

Months ago, through the direction of Great and Wise we started working with a home health nurse that comes about every three weeks to get and test Marty’s pee.  The most recent test indicated a urinary tract infection.  That was last Friday.  We started the typical antibiotic and frankly Marty seemed to be doing great.  

Monday, the day I was driving, the day the thought of normalcy flashed through my melon, the home health nurse called and said the normal antibiotic was not going to work.  Marty had Pseudomonas Aeruginosa in her pee and we needed something different.  Okay, no biggie, I called Great and Wise, just change the antibiotic, we will be good as new.

Then it got a little complicated.  I talked to nurse Wendy and she said yep, Levaquin was not going to be our friend this time.  The only friendly antibiotic that Marty wasn’t allergic too required intravenous feeding, thus she is sentenced to five to seven days in the hospital with no possibility of peerole or pardon. 

After consultation with the Great Office of Great and Wise we delayed our check in just a tad.  I had a meeting with the fabulous Sheryl, our financial guru, and we badly needed haircuts.  We did both of those things and checked into Providence Hospital on Tuesday at 3:30, just like The Hilton but without the mini bar but a really cool moving bed.

This whole process is a little scary because it is exactly what happened five years ago when Marty had her last and worst seizure, a seizure so powerful she broke her left arm as she laid in bed being treated for the exact same illness we are dealing with today.  It’s a little déjà vuie and not in a good way, in fact, in a very bad way, that was a dark time.

That hasn’t happened this time.  We got past that first day and no seizures.  All of Marty’s blood work is coming back with good numbers, her chest is clear and she is actually feeling okay.  I give her about two days before she gets really stir crazy.  She will probably get a little nuts and her dirty hair will bother her because she is doing her five to seven days for possessing bad pee.

When the new nurse came last night she asked several Marty several basic questions to determine her cognitive functioning and orientation as to time and place.  She never knows the year and bless her heart she still thinks George Bush is President which is kind of like living in the Twilight Zone forever.  

She answered all of the other questions perfectly and with vim and vigor with just a hint of sarcasm.  

To conclude the visit the nurse turned to Marty and asked, “Do you know why you are here?”

Marty, without pausing, jerks her right thumb to me, the poor goober sitting to her right minding his own business and says, “Yeah, him.”

Okay, yes I brought her here; no I didn’t have anything to do with stinky pee.  I’m just glad we have good people taking care of her so I will take the rap and play the snitch, this time.

My Diary

I love a good pen, one that feels solid in your hand and writes smoothly.  My kids gave me a new fountain pen and journal for my birthday and I have been busy updating some scribbled notes which show the arc of our history over the last ten years.

Since we came home from the second stroke I have documented in my own patented sloppy manner all of the trips we have made to the hospital since 2007.  The pattern has definitely changed for the better, for a lot of reasons. 

When we came home after the first stroke in June of 2005 we went to a number of doctor appointments but only returned to the hospital one time, in July, to get Marty’s bone plate in her skull replaced.  I say that so easily now, it was a real struggle at the time.

When we came home in June of 2006 after the 2^nd stroke we were in the emergency room that same month fighting off what become an endless series of infections.  Marty was admitted to the hospital three times between June and December of 2006.  

I wasn’t sure I was ever going to be able to be the kind of care giver I wanted to be or the kind of care giver Marty needed. I was ready to give up because the medical issues were overwhelming.  It wasn’t just being in the hospital, it was the worrying about getting to the hospital, it was worrying about when to go to the hospital.  I was not qualified to make those kinds of decisions.

In 2007 things got a little better.  We went almost a whole year without being at Providence Hospital and then the fall hit and respiratory infections hit hard, we were there once in September and twice in October.  This is when Great and Wise recruited a younger prettier Great and Wise pulmonologist to help with respiratory issues.  We got a vibrating vest, a better understanding of respiratory hygiene and some new meds.  We went eight months before we went back again.

The following year, 2008, we went back in the hospital three times, clustered in the summer for urinary tract infections and the regular fall visit for an upper respiratory thing, it was about here a genius respiratory therapist recommended we start using a BiPap machine, similar to a CPAP to help Marty breathe better at night, it helped.

2009 was a seminal kind of hospitalization, this was one where Marty got really, really sick with an upper respiratory thing that developed into pneumonia.  I thought I was going to lose her on the night we first took her to the ER, she was weak, was having a hard time breathing and her blood pressure was very low.  I think this one got Great and Wise too as he asked that fatal question, what are her wishes.

From this episode I learned how to deep suction and things changed for the better.  It is an invasive procedure; it is uncomfortable to the extreme for Marty but being able to clear her lungs has been maybe the single biggest improvement we have made.  We didn’t see the inside of the hospital again until the end of February 2010. 

The visit in February of 2010 seemed simple but rapidly became complicated.  It was initially a UTI then an upper respiratory thing, then Marty had a major seizure that was so violent she broke her right arm as she lay in bed.  Marty was in the hospital for almost three weeks that time and we came home physically and emotionally wounded, her strong right arm was no longer strong and we had to decide how to proceed with recovery.

We got through it, made some changes, started treating osteoporosis, and stayed out of the hospital until November of 2012 and that wasn’t your basic infection admission, she got a stomach virus and was severely dehydrated.  We didn’t have to stay long.  We had been hospital free from March of 2010 until November of 2012, a long respite.

In 2013 we had a bad run of urinary tract infections.  UTI’s make you really sick and frankly they are hard to diagnose for Marty.  We went to the hospital in February and went back again in June.  She was really sick in June, really sick.

We watched the 2014 Super Bowl in the hospital with another UTI.  After recovery we took a different approach.  Great and Wise started Marty on a prophylactic antibiotic and we got a home health nurse to come out on a regular basis to get a clean urine sample to test.  Marty has had some UTI’s since then but we have caught them before she got really sick or septic.  Yeah us.

We have not darkened the doors of Providence for over a year.  We haven’t even been to see Great and Wise that many times.  The unpleasant task of deep suctioning, the daily antibiotics and the home health nurse have moved us to another part of our journey.  We are maintaining.

That doesn’t mean I don’t worry or fret or occasionally make a trip to see Great and Wise unannounced.  We have been to the ER for a diagnosis but we haven’t been admitted.  

Frankly, we haven’t been admitted because I worry and fret and because Marty is a good patient and accepts we are going to do some unpleasant stuff to keep her well.  It’s working.

All of this is to say, I kept records, as you can see, not particularly meticulous records, but records none the less.  It’s a poor excuse for a diary but it does show where we have been and more importantly how far we have come.

We still have miles to go.

Okay is Really Very Good

It’s been about six months.  I hate to put the bad voodoo on us but it’s been about six months since we have seen the inside of a Providence Hospital room.  

For us, for the chronically ill, this is a big thing.  Not doing the hospital for any length of time is freeing, it’s cause for celebration.

I know, some of you have never seen the inside of a hospital and the only way you would is if death was nigh, but we are too frequent flyers and dance the happy dance when we can string consecutive months of hospital abstinence together.

It takes about six months of good health for me to start to breath deep again, to sort of relax; to let the anxiety meter drop out of the red zone.   Personally, when things are good I quit looking at every blood pressure reading taken and I quit watching Marty’s every yawn, every twitch, and every shiver.  I step off the knife’s edge.

That doesn’t mean I’m not on guard duty.  I still worry about Marty being fatigued and if that’s some sort of indicator.  My ears still perk up to a cough or a choke or a complaint of pain.  I’m just not hyper about….okay….I’m just not AS hyper about it.

Marty was last in the hospital at the end of January for a bad bladder infection.  After that we started a prophylactic dose of a narrow spectrum antibiotic often used for bladder infections.  Since we started that daily regimen we have had nothing but clean pee, can I have an amen for clean pee.

We did make one late evening trip to the ER for what turned out to be an upper respiratory infection we could manage from the house with the assistance of Great and Wise and his fab crew.  We caught it early, hit it with additional big time antibiotics and there you go….home recovery, no hospital stay.

We do the hospital dance pretty well, the fact that you can adapt to almost anything if you do it enough or see it as an occasional necessity is a testament to human adaptation.  Hospitals are not normal places.   

Prior to Marty’s first stroke hospital stays were for monumental kind of illnesses and strictly reserved for the very very sick or injured.  I guess that still applies because when we go to the hospital Marty is pretty sick. 

You’re missing my point…..mostly because I’m meandering.  The point being…Marty is doing really well.  She seems to feel good, she does get tired pretty easy but I think that’s because it’s hard to continually recover and live life when you have had a traumatic brain injury.  She needs really good rest and sleep and sometimes that doesn’t happen.

When Marty is doing well, when she is feeling good, when she laughs a lot, when she makes the occasionally sarcastic remark, life seems very normal, even, dare I say, good.  Am I allowed to feel good in this really weird existence?  Do I have to feel guilty when I do?  Naw…

We were about to get out and run some errands the other day and I caught myself feeling good about our life.  It was quiet, we were going to run normal errands, save the fact that I had to move Marty from her wheelchair to our car, it felt like what you are supposed to feel like when you have retired and don’t have to worry about stuff.  

It was a moment of contentment followed by the kind of mundane errands that life requires of normal people.   I’m okay with mundane.

Blew That Popsicle Stand

On day five of our Providence Hospital occupation our collective decided to accept the offer of Great and Wise and take ourselves home.  It was time.  After five days of IV antibiotics, fluids, breathing treatments, meds, and blood, we blew that Popsicle stand for the friendly confines of our home. 

Marty is much better, she is weak, she is tired, she is not all the way back but I am confident she will be soon.  Tonight she has a clean head, a clean body and her own clean bed; it’s been a good day.

When we went into the hospital last Thursday night Marty had a raging urinary tract infection.  Keep in mind the urinary tract is not just a hose, it’s a kidney, a bladder and has some names Great and Wise used that I can’t remember because I can’t pronounce them and if I can’t pronounce them I can’t visualize them and if I can’t visualize them I can’t remember the words….so there.

Suffice it to say, she was sick, 103 degree temp sick, a whole body sick.  Her white blood count was sky high and it affected her body in ways we don’t like.

We used fluids to flush the yuck out and eventually had to pull back on the fluids because she was getting too much and she started to really wheeze.  Once the fluids were minimized the wheezing improved; with the infection tamed by the miracle of modern drugs Marty started to feel better. 

Feeling better really started yesterday, Sunday.  You can always see it first in her eyes and the way she holds her head; if Marty holds her head up, looks around and makes eye contact with the people in the room I know we are headed in the right direction.  That started yesterday afternoon.  Until then she had worn the sick, I need to lay down in a hospital look.

We passed a couple of other blips yesterday and we talked with Great and Wise this morning when he came to Marty’s room this morning (Monday).  Yes, he comes to Marty’s room, in the hospital, doing rounds, healing people.  How cool is that?

He came in and said he didn’t see any reason we needed to stay unless we just felt too uneasy to leave.  Marty had her leaving face on even at 7:30 a.m...  We opted to leave.

The suddenness and the depth of this illness are troubling to me because it plays right into my obsessive anxiety ridden approach to watching my charge.  I hover, we all know I hover, and I watch Marty’s every movement to make sure it’s not odd or out of synch or different.  My hyper vigilance has now been reinforced with this latest illness.   

I’m probably going to be worse for a while, until I can get some time and distance between us and this most recent event.  It usually takes several weeks of normal life for me to relax my ears and get off point, to get past always being on edge waiting for disaster, looking for the next weird thing.

My fretting drives Marty a little nuts, it drives the caregivers bit nuts, and it really drives me crazy.  Tough shit, can’t help it, it’s why we were in the ER before her blood pressure crashed.

Hey, we’re home.  Marty is safe, she is as well as one can be given the circumstances of the last few days.  We are grateful because we know we are one infection away from very bad outcomes, but really, so is everyone else, we just practice more.  

Right now, today, tonight, we’re good.