Birthday Dinner - a break from the routine

Spending nights at the hospital has become pretty much routine these days. Today, I'm taking a "selfish" break to have a birthday evening with my wife and family. A leisurely dinner, time in front of the TV, and just doing nothing at all. Sounds really good after the events of the past few weeks.

Happy Birthday to me!

All I want for my birthday are two healthy parents. My mom was in the emergency room yesterday, probably a victim of the high stress we're all undergoing during the current medical crisis with my dad. Thankfully, the pain she's been feeling in her chest is "just" stress, nothing more severe, so she was released from the emergency room without treatment.

Still, it's good to know she'll be OK. My dad seemed to be doing quite well yesterday as well. He had a healthy appetite, and seemed to be getting better on many fronts.

Taking their music seriously

For those of you who play a string instrument, you know how important it is that it be properly tuned. Have any of you wondered what lengths someone might go to to have their instrument tuned to perfection? I'd venture to say if there is a Guiness Record for highest cost, this would be it.

On a lighter note...

Nothing on my mind lately except my father's recovery. So, it was refreshing to scan the internet and see this news story about a sexual deviant who had this reaction to being caught in the act.

Amen.

Roller Coaster Ride

Another day, another symptom. The rash has returned. Whether it's SJS emerging again as the steroid doses are cut back, or whether it's something else (someone suggested septicemia) I don't know. I do know that for most of the day on Friday, my dad seemed weaker than the previous day. He needed to be fed (as opposed to feeding himself). There were a couple of times that he seemed to be "out of it", saying things that didn't seem quite right.

By the end of the day, he was drinking by himself (holding cups without spilling) and eating nearly everything put in front of him (thank goodness he still has an appetite). Today, the plan is to remove the catheter, as this may be a contributing cause of the bladder infection. If the platelet count doesn't improve soon, the doctors will need to check whether the bone marrow has been infected.

Also, the doctor yesterday confirmed that my dad has contracted pneumonia (always a strong possibility when immobilized with infection for long periods). They seem to have that under control, but I wish they had informed me of their fears earlier. I might have taken better care to isolate myself and other family members from possible contamination. Still, despite the pneumonia, his breathing seems to be stable, if not improving.

Anyway, it's time to get to the hospital, so I've got to run for now.

A mixed bag

Today, things are a mixed bag. My dad started the day feeding himself. Yup, he poured his own milk into his own oatmeal, and ate with a spoon! Can you believe that?

But then later, when he was given his standard blood tests, his platelet count was down dramatically, to levels considered quite unsafe. Doctors now think the blood infection may have spread to his bone marrow. These are only preliminary guesses, so I'm going to try to remain positive.

My dad is getting better - slowly

Unbelievable! My dad has such a will to live, I just can't believe it! On Tuesday, I was at the hospital at 2:00PM. I had hoped to leave at 8:00PM, but my dad specifically asked that I stay. He had been coughing terribly - those wet, wheezy, mucousy coughs that signalled some sort of chest infection. And his limbs were bloated with edema. I didn't leave the hospital until 11:00PM, and only then, after ensuring that the nursing staff had set up emergency suction, in case my dad started to choke on his own phlegm.

Imagine my relief when I arrived at 2:00PM Wednesday, to see him breathing without wheezing (though still with an assist from an oxygen feed). I noticed that the only time he choked was when he inadvertently tried to take nutrition through a straw and ended up breathing in the food (rather than sucking it in) through his straw. By evening, he was able to speak a bit more clearly, and tried to give us (my sister and I) a show of his sense of humour.

So, I was able to leave at 8:00PM with a clear conscience, and the knowledge that he will most likely make it through tonight with little discomfort.

How I spent Victoria Day

Victoria day is traditionally celebrated here with fireworks. Unlike the Freedom Festival in July (where Canada and the US celebrate a joint holiday with a large fireworks display), the fireworks on Victoria Day are more subdued and personal. People buy personal fireworks for their back yards and fields, and the sound of cherry bombs (illegal but somehow, readily available) can be heard everywhere. I was hoping the hospital would effectively shield my dad from these sounds, since, in his current condition, they could be interpretted as sounds of war. I had nothing to fear in that regard... the hospital was quite soundproof.

I got there at 2:00PM today, expecting to stay until the end of visiting hours at 6:00PM. Being a holiday, visiting hours were restricted today. When I got there, I was pleasantly surprised to see that my baby sister was there with my mom, and they had been there since 12:30PM. I guess my dad must have enjoyed his massage, because he told my sister about it! When I arrived, I saw her giving him a backrub.

I'm afraid my dad didn't look well on Monday. He often motioned to us to come near, but he was speaking with much difficulty, in the most hushed tones, and we often could not understand what he wanted. He gestured, but even these motions were difficult to decipher. All-in-all it was a frustrating visit. The more we wanted to understand him, and the more we wanted to do for him, the less we understood what he wanted. His breathing was so laboured, at various times he was given a Nitro-spray (a dose under the tongue to help "revive" you), and an oxygen mask. He coughed up so much phlegm, we thought he might have pneumonia; although the doctors didn't think he had actually contracted it.

The doctors did say, however, that the battery of drugs he was receiving left him quite vulnerable to further infection and pneumonia.

My mom and sister left the hospital some time after 7:20PM, and I stayed until 8:00PM. I am posting this some time after 5:00AM on Tuesday morning, and I called the hospital just before writing this post to check with his nurse. She said he survived the night, and is resting comfortably.

Gambling man

Before going to bed early Saturday morning, I had emailed my sisters about my dad's condition, then tried to get some sleep. My mom was the first to call. She woke me before 9:00AM to ask what room my dad was in. Although I gave her the information she wanted, I also told her she could have found out just as easily from the hospital. I guess I snapped at her, but I was tired. I fell asleep again. Less than an hour later, my sister called to let me know she had called the hospital, and my dad had gotten through the morning OK. I went back to sleep again, and stayed there until noon, when my wife woke me up to go to lunch.

After lunch, I visited the hospital and stayed until nearly dinner time. I probably should have changed my plans, but we had made arrangements to have guests to our home for the holiday weekend, and we didn't want to change our plans at the last minute. Still, I had gotten a chance to see my dad for a good few hours.

Sunday morning, my sister called. She reported that dad had taken a turn for the worse, and that the infections ravaging his body had now infected his blood. Doctors were only giving him a 50/50 chance to survive the next 48 hours. I called my baby sister in Toronto, and told her to get herself to Windsor. Then I called my dad to let him know I'd be visiting him later in the day. I couldn't make out what he said in response.

Sunday afternoon, after my wife returned from church, and after we had eaten lunch, she asked whether she could accompany me to the hospital. I know that she doesn't like hospitals, and is having a tough time dealing with the aging of our respective parents. Still, I agreed that she should come. My wife is a beautiful soul, and her smile exudes love. As she stood by my father's side and held his hand, he looked lovingly at her. I'm sure he was feeling the love she brings to my life, and was celebrating the fact that I would have a wonderful partner to see me through my old age. While she held his hand, I massaged his legs and feet, bringing sensation to his extremities. He really seemed to enjoy the rub.

This visit wasn't as long as I would have liked, but we again had things that needed to get done, so my wife and I left after a couple of hours.

Later that night, my baby sister called to let me know she had arrived in town. I think she might have visited the hospital on Sunday evening, but I wasn't there, so I can't say for sure.

Death - it's nothing like you see on TV

I've been to the emergency room before, but tonight was different. It was a busy Friday night, the first night of a long holiday weekend in Canada. My dad's Acute Care station was just across from the ambulance unloading bay. Everyone who was admitted to the emergency room had to pass by my dad's station, which was adjacent to the nurse's monitoring station. As I sat with my father, comforting him, holding his hand, stroking his face, watching him deteriorate in front of my eyes, I began to despair. It was the first time I had ever seen him so weak, and the first time I had ever heard him talk about his own death in a matter-of-fact manner. Until now, his thoughts on death were that it would come soon enough, "but not yet" (to steal a line from Gladiator). He said things to me, in a voice not loud enough to qualify as a whisper, that a man says when he thinks he's near the end of his days. They were beautiful things, the things a dad says to a son or daughter, the things that don't get said while all is well. I tried desperately to hold back my tears. Thankfully, he was drifting off into laboured sleep often enough to find opportunities to dry my tears and slip away for short periods to compose myself.

Occasionally, a nurse would come by to check the IV line, adjust the monitor, or ask whether my dad needed anything. For the most part, however, my dad was left in my care, to sleep, to wake, and to smile as he saw my ever-present face.

I think it happened around 1:00AM, though I didn't check my watch. I had heard them call the code, and vaguely remember the sounds of hustling staff. And then the wail... a sound unlike any I had ever heard. You can watch as many newsreels as you like, and I've watched my share, but to hear the sound of death with your own ears, happening not 50 feet from where I sat, was something that will haunt me always.

Except to say that the words were foreign, I don't know what language was spoken. It really didn't matter. No translation was necessary. Voices, young and old, proclaimed the passing of a loved one.

I began to cry. My first instinct was to find and console those that were crying. I hadn't seen them... didn't know them... but I knew they needed company. And then I looked at my father. He had managed to sleep through the awful sounds, and they hadn't even seemed to register on his sub-conscious, because I didn't see evidence that his recurring nightmares of the Nazi concentration camps had been any more intense than usual.

I was to learn afterward that the room had been available since 8:30PM the night before, but due to paperwork SNAFU's, the busier-than-usual night, and a shift change mixup, my dad did not get taken to his room until after 2:00AM. The resident on duty wanted to know whether I would stay to help fill in the medical history, and I indicated I would. By the time she got back to me, it was more than an hour later, and I was finally finished by 3:45AM. My father was now resting as comfortably as could be expected, and I was completely wiped out. I got home at 4:15AM, tried to unwind, and finally got to sleep around 6:00AM.

So, where were we...

When I last posted, my dad had been brought to the resthome and I was going to bring the TV.

I brought him his TV first thing Friday morning, and had it hooked up in minutes. I had intended to leave to go to work, but all did not look well with my dad. He was listless, and complaining of pain to his ribs. He could barely speak, and movement was nearly impossible. He complained of a sore neck as well. I thought that he might have fallen out of bed during the night, or been injured by the staff of the nursing home. But, he confirmed to me that the damage had occurred when he was being quickly transferred to and from the ambulance the previous day. It seems that Emergency Response Team members are more concerned with getting you to the hospital quickly than ensuring you are comfortably transported.

He didn't seem to have much of an appetite, and for the first time, he was having trouble taking his medications. The nurse assigned to him was having some success getting him to take the meds, but it was clear that she was falling behind her schedule while looking after my dad, and it was beginning to show in her attitude.

My sister and mother visited my dad while I was still there, and he seemed to enjoy the company. The only thing is... my mom was not very happy about our decision to place my dad in the resthome, and she was arguing with us within earshot of my dad. I'm certain the disagreement was causing him distress, as he seemed to be having more and more trouble breathing.

I couldn't take the combative atmosphere, and finally excused myself sometime around 1:00PM to finally get to work. Having not yet eaten breakfast, I took a bit of a leisurely lunch break before heading back to my home-office. I had only been working for 15 minutes when my sister called. My dad's laboured breathing was being caused by fluid in the lungs, according to a nurse at the home, and he was running a high temperature (105 F). My sister had instructed the nurse to call for an ambulance.

During one of the worst thunderstorms / tornado watches I can recall, the ambulance came and rushed my dad to the hospital ... AGAIN!

My sister, bless her soul, was, by this time, being labeled the family villain. My mother resented the decision to put my dad in the resthome, and my dad resented her for arguing with my mom. My sister finally hit the breaking point, saying she would have nothing further to do with managing my dad's health care. She basically drove my mom home, and said adios. I really don't blame her. You don't know my mom. She's a real piece of work, but that's a story for my therapist, not this blog.

I had been informed that my dad would not be returning to the resthome. If he were ever released from the hospital, he would be returning home to the care of a live-in nurse. So, while the ambulance sped off with my dad, and my sister drove my mom home, I was left to clean out his room at the resthome.

I spent much of Friday night at the hospital in the emergency room. I had been thinking I would avoid the hospital that night, because there would be too many people there. It turned out that when I arrived around 7:30PM, my mom was there, but not my sister. My mom had been there since 4:00PM and stayed another half hour. At that point, I took my position at the side of the bed, and decided to stay with him in the emergency room.

Will it ever end?

What a difference a day makes. Wednesday at noon, my dad was released from the hospital. I spoke with him by phone when he got home. He sounded perfect, and I visited him during the afternoon. He actually looked surprisingly healthy! Except for the rash, which will take several weeks to clear, he was back to his vibrant, funny, take-charge self. It was a joy to behold.

Thursday morning, just before 8:00AM, I got a call from my mother. She was calling to let me know that some time around 3:00AM, my father had screamed for help and my mother came running, only to find him laying on the floor of the bedroom. He hadn't fallen... he was just too tired to get back into bed after a trip to the bathroom. She's nearly 80 herself, and couldn't get him off the floor, so she called the ambulance. Good thing too. When they got to him, he was close to death. I shit you not.

From miraculous recovery to a near-death experience, in a matter of hours.

He would later tell the nurse at the resthome that it was the worst night of his life, but I'm getting ahead of myself.

He spent about 7 hours in the emergency room, on fluids, before the doctors basically said that all he really needed was close medical supervision, so he would take his meds and do what's required to get well. Without even admitting him to a room, he was discharged into the care of my mother and taken home.

This is the second time he's left the hospital in good shape only tor return in under 24 hours. And each time, the downhill slide had come faster than the time before. My sister and I had decided that what was necessary was close supervision outside the hospital. After some calls, we decided that the best course of action would be to have him in a private nursing home - at least until he can completely recover from the current bout with SJS. Within hours of making this decision, he was registered at a local nursing home, and we moved him out of the house.

At least now, he can be cared for by professionals, and my mother can be alleviated of the burden of trying to care for my dad. Last night was his first full night there, and since he doesn't yet have phone service, I don't know how the night went. I do know that my name was the "emergency contact" on the admission form, and I didn't get a call. So hopefully, things didn't go too badly for him.

Today, I have to bring him his TV set and make arrangements for him to get phone service.

I can't sleep

It's early Wednesday morning, and I can't seem to fall asleep. My dad is supposed to be released from the hospital today. He still has all the outward signs of the Syndrome, but the doctors say he's recovering nicely and has been flirting incessantly with the nurses. I am a bit reluctant to see him getting out before he's completely cured. After all, I think he was prematurely released after the surgery on May 5th, indirectly causing the syndrome in the first place. When I see him in person, he seems to be getting stronger, though he still looks terrible. And when I speak to him on the phone, he sounds so weak and frail. I don't think he's got that many miraculous recoveries left in him, so I don't want to push his luck.

Permanent eye damage averted

In what has been the best response yet by his team of physicians, the lead doctor called for an opthamologist consult, and that doctor has determined that no serious damage has been done to my father's vision. That's so gratifying, since the affected eye is the stronger of his two; and had it been damaged, my dad could have been declared legally blind. I guess good luck continues to ride on his shoulder.

1 in a million

I've always said my dad is special. Now, just a week after his 84th birthday, I have conclusive proof. Stevens/Johnson Syndrome, developed in 1.1 of every million surgical patients, seems to be the diagnosis-du-jour for my dad's condition. Seeing him in the hospital yesterday, with open wounds on his face, arms, neck, and body, brought me close to tears. For a man who's suffered through Buchenwald concentration camp, prostate cancer, triple-bypass surgery, and most recently, congestive heart failure and a pacemaker implant, seeing him complain of "burning lips" seemed like a petty reaction to what I thought was a simple allergic reaction to medication.

Now, as I read about the symptoms of Stevens/Johnson Syndrome, and how the symptoms are akin to those in severe burn patients, I understand his pain. And I am hopeful that he will see his way clear to allowing the hospital staff to properly treat this condition. Again, according to what I've read, the treatment may involve a hospital stay of several weeks, as doctors attempt to stabilize the condition, rehydrate the affected areas, and re-introduce the lost nutrients to his system. I've read there may be permanent eye damage resulting from this condition, though I am hopeful this does not come to pass. I must say that his initial symptoms were diagnosed as an eye infection and thrush, for which he was given medications which now turn out to have done more harm than good.

Another turn for the worse

In the continuing saga of my dad's recuperation, things have taken another turn for the worse. The initial reaction to the antibiotics was treated with more medication, and this proved ineffective. While getting just a tad better than at his worst, my dad is still being adversely affected by something in the post-op cycle, and today, he deteriorated to the point where he had to be readmitted to the hospital.

I am very scared.

Welcome to our home

For those who've followed my blog through the years, you know I lost my job a couple of years ago, and we had to drastically downsize our house. Thankfully, my wife is very resourceful, and has great taste. I'm very proud of the job she's done, making the smaller house a home. I've decided to share with you a picture of our living room. As cramped as it is, my wife has still managed to transform it into a very comfortable area, and she's particularly smitten with the art gallery look we've added since Christmas.

Allergy identified and dealt with

So, the allergic reaction caused a skin rash that no-one at the hospital noticed, and the skin rash escalated into something more severe. By afternoon, the rash had turned to pustules and they had begun to pop. Thankfully, my sister spent most of the day sorting things out, and after a trip to hospital emergency, he's now been hooked up with Benadryl and a different antibiotic. Things should start to improve from here.

Post-op complications

I swear, nothing seems to go easy these days. I posted on Wednesday night (actually early Thursday morning) on just how well my dad looked at the hospital. He was smiling, joking, flirting with the nurses, and that twinkle in his eye was shining at full strength. I visited him at home on Thursday evening, after he had been released from the hospital, and I swear someone switched his body for someone else.

His voice was gravelly - so different than what he usually sounds like, and his face and lips were so puffy he was barely recognizable. Apparently, things didn't get any better on Friday, so when the home-visitation nurse came to check on him, she commented to my sister that the swelling in his face wasn't normal. My sister took dad to an after-hours clinic last night, and apparently, he's having some sort of allergic reaction to the pain and/or antibiotic medications he was given after his release. So now, he's taking even more pills to combat the allergic effects of the other medication.

And all these medications are now in addition to the 16 other pills he's been taking on a daily basis since his pacemaker implant. I thank God he has the wits to keep his medications straight, and the will-to-live to keep taking them all. It's really painful to see him looking so strange, and of course, I think he's feeling discomfort, which makes it all the more intolerable. I'll be so happy when he's gotten over the hump and returns to normal.

Successful surgery

When my dad underwent his pacemaker implant last month in Phoenix, the doctors there tried to hook up a colostomy bag to make him more comfortable during his recovery. Unfortunately, in an attempt to find the proper spot, the doctors accidentally nicked some old scar tissue from a prior medical procedure and did some damage to the previously healed tissue. This caused a slow leak of internal bleeding that the doctors in Phoenix recommended he have looked at, once he had regained his strength.

Today was the day his procedure was due to be performed. There had been some concern that he would be unable to cope with a general anaesthetic, since he had been complaining recently of some weakness and shortness of breath. Thankfully, the procedure only required a local anaesthetic, and it went off without a hitch. Apparently, the surgery was a success, and my dad is due to leave the hospital tomorrow, or Friday at the latest.

And seeing him tonight at the hospital, I have to say this is the best he's looked since the pacemaker was implanted. I am confident he will make a full recovery.

Eureka!

That night, having returned home after failing to get the equipment properly hooked up, I had a brainstorm. Of course the darned connection didn't work! When I was watching the cable TV channel, piped in directly from the wall hookup, I realized that the tuner in the TV had been tuned to the station he had been watching. And then I sheepishly remembered that to watch ANY external source (VCR, DVD, auxillary input), the TV would need to be tuned to Channel 3! DUH!!!! I felt so stupid.

During the afternoon of May 4th, I kept thinking about how dumb I had been not to think of this the day before. Since I was having an unproductive afternoon with work (I think I was coming down with something - I was feeling very warm and could barely keep my eyes open), I decided to visit my father and test out my theory.

Sure enough, as soon as I switched the TV to channel 3, I got a perfect signal from the DVD player.

Dad has been resisting all of our attempts to get a computer, a newer TV, or anything technological in nature. At his age, he keeps insisting that such a purchase would not be worth the investment. Mind you, he's been putting this argument forward for more than 10 years. Just imagine how much fun he could have been having if he had relented all those years ago. Regardless, when I got the DVD working, and inserted a picture disk with hundreds of digital photos (both direct camera shots, as well as old, scanned pictures), his eyes lit up. And he said something I would have never believed possible. He thanked me for doing this, against his wishes, and admitted that the idea was wonderful.

I had made a variety of test disks to take to his house, to see what formats the DVD player would be able to read. Of the three disks I cut, two (CD-Rs) were readable. The CD-RW was not readable, because it was actually produced on a Mt. Ranier compatible CD-RW drive, so the format was actually CD-MRW, which could not be read by the player.

Over the next few days, I'm going to cut a proper CD-R disk with thousands of family pictures, and give them all to him. Once he learns how to use the player, I'm sure it will be one of his favourite past-times.

Happy Birthday Dad - Day 3

Day 3 was actually May 3rd, my dad's actual birthday. By the time that day rolled around, all the out of town guests had returned to Toronto, and my dad was finally able to get a day to himself. I came over for a while during the evening to try to set up the DVD player my sister had bought. Since he has an old TV with only a cable-input, I had purchased a multi-input converter... something that would allow him to plug the cable input and the DVD into a single box, and would hook up to his TV via the cable input connector.

I spent nearly an hour trying to get the thing hooked up, because first, he didn't have a power source close enough to the TV (i.e. a power source with enough empty plugs to accommodate the new equipment). Rummaging through the miscellaneous crap drawer in the utility room, we came up with a polarized extension cord. Next, he didn't have an extra cable patch cord to go from the converter to his set. A quick trip to Wal-Mart solved the latter problem (thank God they're open past 9PM). I hooked everything up, hoping to see great things happen, only to find a snow-filled screen any time the DVD player was turned on. I tried for a half hour to find the problem, but finally had to give up. I resolved to return the next day with a good quality S-Video cable, instead of the crappy RCA's that came with the converter.

Despite my failure, my dad seemed truly appreciative of my efforts.

Happy Birthday Dad - Day 2

Day 2 of the birthday marathon went exceedingly well. Christie, Jesse and the kids came. Jonathan also was there, as were my parents (of course), both my sisters and my brother-in-law. And for a while, the dogs were allowed to have the run of the house, a kind of "coming out" party for Jasmine.

She was a great hit, of course. And it was simply amazing how Jasmine got along with Emily and Courtney.

The previous night, my sister had dropped a broad hint that she had intended to buy a DVD player for my dad. She needed my assistance to ensure it would be technically capable of playing all the required types of disks, and be compatible with the old-style TV my dad uses. So, on Sunday morning, we went shopping for the DVD, and after buying one, it was up to me to work out the connection details. My sister gave the DVD player to my dad in the morning. Later, when everyone was over my house, I gave him the second part of the gift - the connection/conversion box needed to feed the signal to his TV set. On Monday, I'll visit my parent's house to install everything.

Happy Birthday Dad - Day 1

Having come close to losing my dad over the past month, this birthday takes on added significance. Although his actual birthday is on Monday, the entire family has decided to make this weekend an extended birthday celebration. My sister came from out of town for the occasion, as did my niece and her husband, bringing their 16 month old son (my dad's first natural great-grandchild) and dog. Tomorrow, day 2 of the celebration will be at my home, and my dad will get to visit with my step-children, and their children (though technically not his great-grandchildren, they've been around for 5 and 1 year respectively).

I won't spoil the surprise by saying what's in store for him tomorrow, but I know he'll enjoy it.