Baptism by Fire...

April 30, 2009, 3:00 pm EST. My husband gets home from his extended medical stay. It's the first time he's been home since November 23, 2008. I don't know what I expected. Perhaps a smile or a "hallelujah" on his part or something. Instead I get a depends full of poop and then he threw up on me and the freshly made bed. He had been home for all of 10 minutes and I already had to change his clothes and his bed sheets. An omen probably.

I've been doing this long enough to know that things don't always go as planned, in fact, they very seldom go as planned. No home health personnel even showed their faces today. NOBODY! So it's just me and the daughter. He's all ours today. I have no pump for his overnight, gastric tube feeding. I have no insulin in the house because I didn't know what dosage or what type of insulin he had been getting. There's no bandages in any of the bags that were dropped off with him so I have nothing to do dressing changes with tonite. Of course he needed one because of the poop incident upon arriving home. He has several decubitis ulcers from being in the bed too long. These things are nasty and it's always best to avoid getting them. It's always hard to catch up or get ahead of them once they start. Diligence and persistance is the only way. So I had to go to the local pharmacy and buy bandages and tape, insulin and needles and I also got him some lip balm and Robitussin cough syrup. $86.00 for that. I couldn't use his insurance plan because then I would have needed prescription from his doctor for the insulin. And the nursing home doctor didn't send any prescriptions home with him. So buying the insulin was all I could do.

I prepared spaghetti with a meat sauce for dinner. He ate 3 forks full. That was all there was to that. He didn't even swallow those. So his answer of "yes I'm hungry" was apparently something he thought he should say whenever he's asked if he's hungry. After failing to get him to eat anything more substantial for dinner, I realized that perhaps I've made a grave mistake in getting him home. It was sobering to say the least. But I'm determined things will go better once the home health agency arrives and takes over the patient care. I haven't done real patient care in over 15 years. It doesn't take long before my body reminds me.

He's been home for 8 hours and I've changed him twice, changed his clothes once, changed his sheets once, replaced his "draw" sheet once, tried to get him to eat and turned him twice. I feel like I've been working for a month already. He's resting comfortably in his bed in our room with the TV on. It's going to be a long night I think. Hopefully he'll sleep for the rest of the night. I will turn him over one more time before going to bed.

The home health folks can't get here soon enough. I will be calling them if they're late tomorrow. Someone's got to get his tube feedings going and his dressing changes started.

What a grand first day home. It's had a little of everything already.

Welcome Home Baby!

You Can Go Home Again....

As I started to prepare for my husband's return to our habitat, I thought, "I hope this isn't going to be difficult." Coordinating everything like a maestro directing the Philharmonic can be a daunting task.

I first had to get things physically in order. Re-arrange our bedroom in order to make room for the hospital bed. The full sized bed we had occupied since I moved in with him all of those years ago would be too large to remain. It was like saying goodbye to an old friend. I dismantled the bed piece by piece and I thought about how far we had come and how we ended up here. The old friend was now resting in a different room waiting to be placed somewhere for permanent storage. Of course, now I had to find myself something to sleep on. So I started shopping around for a twin bed. Who knew mattress sets would cost a small fortune? Luckily for me the local Mattress Discounters was having a sale. I can now have a good night's sleep on them! Price: $284.00. The salesman tied the mattress to the roof of my small Escort. I carefully made my way back to my home, which was about 5 blocks from the mattress store, navigating turns like you do when competing in the "egg in the spoon" race on May Day in elementary school. I found a twin size bed frame on the employee barter board that's sponsored by my employer. (Think mini-eBay). Price: $100.00. Total spent thus far: $384.00. I dressed my new bed with a cheap set of sheets from Wal-Mart and my favorite NFL team comforter & sham set also from Wal-Mart. It's looks nice!

Next step is to pick a day for him to be discharged from the facility. I take my time with this step as I know I have plenty of time before his coverage runs out. Before I know it, it's the last week of April already! Coverage runs out on May 1st. So I decided on Thursday, April 30th. Since he's already scheduled to be transported to dialysis that day I say why schedule a completely separate transportation day? Just bring him home after dialysis instead of returning him to the nursing facility. The social worker agrees and it's set in stone.









My husband sitting outside of the facility on a nice spring day.


I've asked for several big items to make this as smooth a transition for all involved. He will be bedridden upon his discharge to home so a hospital bed is a must, bedside table, and a patient lift to keep the help from getting back problems. He's not going to lie around in that bed for days on end. Oh no...he must get out and feel a part of the family again.

My goal is to get him out of that bed completely through prayer, daily exercise and love.

A local home health agency will be helping out with his care. They hope to be able to give us 10 hours a day. I still work full time so that will be a tremendous help. I'm figuring that if the home aid will do the majority of the "heavy duty" patient care then I can come home and pick up the "loose ends". This, hopefully, will keep me from getting burned out.

As I contemplate what I'm about to do, I sometimes get an inkling of doubt. Is it the right thing to do? Will I be able to do it for any length of time? Can I do what's necessary for his well being? I know that once he gets here there's no turning back and that my life will change, once again, dramatically. I'll be tied to the home 7 days a week pretty much. No impromptu outings. Everything has to be planned in advance. The world will revolve around him. Funny, that's the very thing I've fought against since I met him 26 years ago. "The world doesn't revolve around John F. you know." That's what I used to say to him whenever I thought he was being particularly selfish about something. The irony of life is amazing.

So in less than 12 hours from now, my husband will return home after being hospitalized for 5 months. This latest illness served as a reminder just how fragile he has become. He hates hospitals, doctors or being handled with "kid gloves". But that is his life now and he must try to remember that whenever he's not well it's important to get to the hospital sooner rather than later.

He's not the man he once was. There have been some changes in his personality with this current illness. But I stood before God and man and spoke the vow: "In sickness and in health, till death do us part." I meant those words at the time I was saying them and I'm living them now.

This will be my account of the struggles and the happiness that undoubtedly will come. A glimpse of what it's like when marriage meets medicine. A portrait of how one family deals with a chronic illness from a personal point of view and how ridiculous things can be when dealing with the powers that be.

I'll welcome him home and hope that I can make things right for him for a little while longer.

So I guess the old saying isn't really true, you can go home again. We're going to give our best effort and hope things turn around for all of us.

THE ILLNESS

Prior to 2003, my husband barely could catch a cold. He'd have the occasional headache and bouts with allergies but outside of that he was generally healthy. He did suffer with high BP and Type 2 Diabetes. He had seen a physician for both of those diseases in 1988 and was given oral medication to allow him to live with them. He, however, didn't choose to take them regularly and continued to eat whatever he liked with little regard for his health.

We all knew something wasn't right with him. Small things had started to change. he wouldn't call home at night while working(something he had done practically every night since I had moved in with him). When I asked about it, he played it off or chalked it up to being busy at work. Finally he admitted that sometimes he couldn't recall the phone number at home. SCARY! He also complained of a sensation of "heaviness" in his right leg and he had fallen several times while working in the yard, unbeknownst to me. He had also having bouts of nausea with vomiting occasionally. We made an appointment with a new doctor. Before that appointment time came, he collapsed at work. Unable to get off of the floor and not really aware of where he was or who some of his co-workers were, they called for ambulance and the Lieutenant in charge that night phoned me at home and told me what happened. I rushed to the base and after a few seconds of talking with John he showed some type of recognition of who I was. He was taken to the local hospital and admitted. The diagnoses: kidney failure, Type 2 Diabetes, Hypertension, Congestive Heart Failure and "mini strokes". The long road to recovery stretched out in front of us as far as the eye could see. Things did not go well. The toxins that are normally filtered out of our bloodstreams by our kidneys were circulating in John's bloodstream and travelling around his body including to his brain. They wreaked havoc. These tiny, garbage filled carriers made a home in the lining of his brain which caused a type of encephalitis. He had high fevers and an altered state of consciousness for about 3-4 days. This collapse and subsequent admission to the hospital took place in January of 2003. He started dialysis the following July. He suffered with these toxins and a great deal of fluid buildup in his body for 7 months before the physicians give the green light for the dialysis. 11 pounds of fluid was filtered from him on that first session. Unbelievable!

From day 1; he hated it. The needles, the time consumption, the sheer intrusiveness of dialysis was more than he ever thought. And added to his misery was the fact that he had lost his mobility. That was due to his own stubbornness and uncooperativeness with the physical therapy department. Although he regained some mobility eventually, he has yet to walk independently again.

His loss of independence made him bitter and depressed. I'm pretty sure if give the chance, he would have checked out for good.

I battled for his soul. Kept pulling him back from the land of darkness and self pity. It was strong and the pull was too much sometimes but I wouldn't let go. At times he'd take 2 steps forward and 3 steps back. The illness was relentless. Pounding him day after day. The dialysis access would clot time after time and he'd have to get a new one placed. His blood sugars were up & down, up & down like a roller coaster. His mental health deteriorated as time wore on and we all suffered. He was in a nursing facility for 11 months in 2003, He came home a changed man. He was demanding and selfish. Scared and angry. He attacked those closest to him on a regular basis. His verbal skills were all that he had left to fight with.

2 years rolled by and we were hit with a devastating blow. Our 15 y/o son was killed by a stray bullet while standing in our front yard in June of 2005. We were all devastated. It was an astronomical set back for John. He couldn't bounce back. It was too big of a blow for him to fend off. His depression grew. The trials went on for a year. Broken beyond repair, my husband stopped trying to walk. The battle became bigger. The war still rages.