Johnny Goes To the Doctor

Doctor appointment day. The words make me cringe on the inside. Flashbacks of the last doctor appointment day swim around with all of the other stuff in my head. Will the ride show? Will they be on time? Will we get there on time? How much trouble is it going to be to get a stretcher in that tight office space? Just a few of the questions running through my head as I tried to sleep last night. Needless to say, I didn't sleep well. To make matters worse, he got sick around 4 am and I had to get up and clean him and the bed. So much for 3 more hours of sleep.

7:00am Got out of the bed after lying there staring at the ceiling for hours. Puttin around trying to get things together so I won't forget anything. It's like traveling with a newborn again. Everything except the kitchen sink goes with us.

7:30am Aide arrives to help get him ready. I take a quick shower. Turn off his tube feeding. Get a blood sugar, give him insulin, she feeds him cereal. We wait.....and wait.....and wait.

9:20am Transportation arrives! Only 20 minutes late. I'm on the phone with the logistics company as they pull up in front of our home. Off we go.

9:50am We arrive. Appointment is at 10:30..not 10am as I thought. So we wait....They call us back early...at 10:20am. YAY! Appointment goes well. Doctor is pleased with his progress even though there is little progress. But a half a loaf of bread is better than none my husband used to say.

Appointment over we head back to the hallway to wait for the transportation folks to come get us. We have to go home before we go over across the street for his 2nd appointment of the day. I didn't get it either. We were right there and had to come all the way home and go back. Rules. Whose rules? I have no idea. Governmental, no doubt. LOL!

I clean him up and we wait. Transportation arrives and we're off to the 2nd appointment. We waited for 45 minutes to be seen. Nice physician's assistant. Explained everything to the nth degree. He will have to get his dialysis access moved to a better location. The current one leaves him open to infection and in his state it's best to minimize those as much as possible. Agreed. Signed the consent. Off we go home.

All in all things went well especially if you compare to the last appointment. We are both pooped. I eat and take a short nap. He takes a few bites of lunch. Snoozes. He stays up until 10pm. Not awake, just in the chair. He's in bed. Resting. Finally peace and quiet.

We're off to be interviewed for the public transit's handi-ride program on Wednesday. Oh joy! Hopefully this will allow him to go to church when he feels like it or go to some of the family things.

Until next time. Let's hope this calm remains for a while.

The Guessing Game

I never know what each day will bring. Some days are better than others. He's been pretty good for almost a week now. More alert and even talking with me and answering questions more readily than before. He still has the cough. No explanation for that. Perhaps some type of aspiration due to his diminished swallowing ability. Yet he was evaluated 2 times while hospitalized and each time he "passed with flying colors" but he still drools at times and holds food in his cheek. I can usually tell if the day is going to be a good one because he says good morning to me upon waking up. He said good morning today and he's been pretty alert throughout the day according to his aide. He didn't eat lunch well but ate breakfast well and ate a decent dinner.

I spoke with the dialysis social worker today. I wanted to make sure she had arranged the transportation for his medical appointment that's coming up on 6/29. She hadn't so it's a good thing I called. I also have yet to receive a weekly weight that was promised to me a week ago. She told me that the physician wrote the order and it's on his chart. She emphasized that order and hopefully I'll get his weight tomorrow upon his return from dialysis. So this shows you that you have to continually go back and check and double check on things that should have been taken care of already. I also got an appointment card reminder of an appointment that I didn't know he had for that same day. Yep. The dialysis center (I'm assuming) has once again scheduled an appointment with the vascular surgeon without talking with me about it. I have asked them over & over not to do that because I want to be able to go to appointments with him and I need to know up front when they are scheduling appointments in order to get time off to go. This, however, has yet to occur. It's like talking to a wall with these people. I feel like I'm in some sort of power struggle with my own husband's itinerary. They apparently don't lose a moment's sleep over our struggles and tend to look down their noses when I dare question them.

So back to back appointments on the same day should go over really well (note the sarcasm meter is on overload here). It will be nerve wracking for me and he'll be pooped out. Well, I guess it's business as usual. Frayed nerves and too tired to participate in life is becoming somewhat the norm in our household.

Stay tuned. I'll update ya on the day of medical overload.

Seize The Moments...

I've learned that this mantra is one I need to live by at this stage of the game.

It's been quiet and relatively calm over the last few days. Transportation has been on time for the most part, dialysis has gone well and the wound nurse has come for more than 1 visit.

John has been more alert, eating more and actually talking with everyone in the house these past few days. These moments are few and far between and they serve as a reminder to me of the life we used to have together. He's looked more like himself and acted more like himself in the past 2 days than I've seen in a long while. I've tried to enjoy these moments and make sure that he gets the most out of them as well. He's still on the antibiotic for the pressure wounds on his heel and I've picked up the debriding ointment from the pharmacy. The wound nurse will start using this ointment on tomorrow during her visit. It should allow the wound to heal a little more quickly.

I finally got his blood glucose testing supplies in the mail on Thursday. Tomorrow will bring the delivery of the diapers. Good thing, we're getting short on them.

So this past week has been one of calm, take a deep breath and relax for a moment. Remembering our relationship as it was has some good and bad elements. I miss what we had, yet appreciate that we are still here and I still have him with me. For how long, I don't know. But I must enjoy this time for however long it is.

So I take a cleansing breath and brace myself for the next "issue" that will come along. And it will come. But for now, I smile, I laugh, I hug him and I tell him I love him and he actually said, "I love you back". I haven't heard that in a long, long time. It felt good. Sometimes God gives you just what you need exactly when you need it.

Thanks, God.

Thumbing a ride...

Hitch hiking is against the law in most states. But at times I wish that wasn't the case. Today would be one of those times.

I got a call from my husband's caretaker today at around noon. She says to me, "they just picked him up for dialysis." What? That can't be. They're scheduled to pick him up at 10am. She says, "yep, they just picked him up like 5 minutes ago." Wow, I say. What happened, why are they so late?

It turns out that these particular drivers can't be in 2 places at once. Really? Then you're not trying hard enough is what I want to tell them so badly when they say that tired, old excuse. They just came on at 10am and they had a patient scheduled for pickup at 10:15am on the other side of town (amazing how that always happens). So who determines who gets picked up first? Is there some evil dispatcher sitting around in his or her underwear in front of their home computer randomly deciding who gets precedence? Apparently so. My husband is usually the rider that takes low priority. He's always the one that gets passed up for the person that lives "on the other side of town".

So what affect does a 2 hour late ride to dialysis mean? It means that my husband's treatment for today was shortened by 1.5 hours. Instead of getting his 4.5 hours of dialysis, he got 3 hours. Does that have a detrimental effect? Maybe or maybe not. It's hard to tell. But it sure throws everything out of whack. The dialysis centers are often run like a well oiled machine. Everything depends on the thing before. The center opens it's doors for the day and if their first patient is 30 minutes late, that could have a domino effect on the rest of the patients for that day. So the centers make executive decisions and someone always gets short changed. You can't really blame them, they have numerous people in need of this treatment and have to serve the greatest number they can. It's the transportation companies that bear this shame.

I called the dialysis center's social worker and complained and she will try to find a replacement company. Hopefully, the new company will have a slot for my husband and we can move on. Somehow I don't think it will go smoothly. Nothing ever does when you're in mine and my husband's shoes.

Perhaps hitch hiking would avoid all of this and he could get his 4.5 hours of lifesaving treatment. It would save the state a nice chunk of change.

Take Your Medicine...

That's what we always hear.

"Do what your physician tells you, take your medications as prescribed and things will get better."

But suppose the very thing that's meant to help causes harm? Who tells you these things? The physician? Yeah, right. The physician, who no matter how many times you call, you can't seem to ever speak to. That physician? Ooooookkkkkaaaaayyyyy. Uhhhh...just no.

Thank goodness there's an Internet with tons of information at our fingertips. What did we do before this great and wonderful invention? Wander around in the dark, groping our way through our lives without a clue I guess.

My husband has had this nagging cough since about 2 weeks prior to his discharge from the rehab facility. I questioned it over and over with the staff. I never got any type of answer from them. It was a deep, rattling cough, like he had bronchitis or something. No fevers, no chills, no other symptoms, just his nasty sounding cough. I chalked it up to him having some type of cold or allergies. When he was released into my care on April 30th, I read the discharge notes given to me by the staff after we had gotten him settled in. There was a chest x-ray done and it was clear. No pneumonia or bronchitis. The "house" physician had written an order for Robitussin every 4 hours as needed for his cough. This cough continued. Sometimes not as bad as others but it was continuous and annoying.

I spoke with several people about this cough and finally was able to get another chest x-ray done 2 days ago. Again, it was negative. No fluid, no pneumonia, no bronchitis..nothing. As I told my mom about it she said, "There has to be something causing this cough. What about medicines, what's he taking?" I said, "he's only taking Insulin injections and Megestrol Acetate Suspension for his appetite. She said, "well how long has he been taking the suspension?" I said I don't know, let me look at the bottle of medicine which was sent home with him. The date on the prescription label was 4/14/09. She said, "look up that medicine and see what the side effects are." I did. Guess what one of the side effects are. Yep. You got it. Cough! Also, it can cause confusion, dry mouth, abnormal thinking, rash, sweating, edema (swelling), increased blood glucose readings! Why would someone give this to a diabetic? Surely there must be something else that can be used. He also had been having sweats at night. T-shirt would be soaked in the mornings. I wondered what caused that as well. Now I know.

I will speak with his physician tomorrow and ask him about this and see if there is something else we can use and if not to tell him I prefer him not to take this medication because of the great number of side effects he seem to have.

The lesson here. Research your meds. Know what the side effects are and report them if you have them. Physicians are only human. Don't be afraid to question. I took him off of this medication on my own, but it's usually recommended that folks not do that. Since this particular medicine isn't linked to anything life threatening, like hypertension, I made the decision to see if he'd do better without it. Things are okay thus far. I will talk with his physician in the morning and let him know what's going on.

We're holding on for now.