Surviving the Pandemic

I'm apologizing again.

It would seem that I'm moving on 2 weeks since the last post. Unforgivable, with the exception that my house has been wiped out by the plague (flu). At least, it felt like we were wiped out. My oldest came home sick on 10/19. I am able to work from home, and did so. Until my fever began on the 23rd.

Diagnosis: Type A flu. It felt like the black death. So, no visits to Dad for the better part of a week. Really, not a lot of visits with anyone, as my family was smart enough to avoid me during the contagious phase.

Regardless, the situation with Dad has changed, gone back to normal, changed some more, then went back to before it changed the last time. For starters, he no longer has "the bolt" in his head. The fluid began to return to a normal color, and his pressure maintained a constant low. About that same time, the bolt simply fell out. Seriously.

At some point during my own illness, Dad developed pneumonia. He was still largely unresponsive and the decision was made to put him on the ventilator. Honestly, we all groaned inwardly, but felt like this was the best path for giving him a chance to recover. His body needed the rest and would hopefully expend more energy fighting the pneumonia and brain trauma.

No longer contagious, I was able to visit Dad this weekend. I continue to hear good stories from loved ones about him responding, opening his eyes, etc. Unfortunately, I have still seen none of this. I'm optimistic and encouraged by stories of up-turned thumbs and okay signs from as recent as last night. I plan on visiting him over lunch, and hoping for some of that response. It's selfish I know, but I would like to see some of that firsthand.

If he is indeed awake enough, the next step is to remove him from the ventilator. It's uncomfortable, and he shouldn't need it if he is truly able to begin moving and working towards recovery.

Alright, I'm off to the hospital for a quick lunch with Mom and hopefully a more lively interaction with Dad.

Rollercoasters

This summer my wife and I took our 10 and 13 year old daughters to Six Flags over Texas. I took along a healthy supply of Dramamine "just in case." I more than made use of the medicine in an attempt to overcome the drops, spins, loops that modern day thrill rides seem to supply in an abundance.

This last week with Dad has left me feeling in need of Dramamine again.

I'm happy to report that the most recent trip left me feeling more optimistic. Dad opened an eye and tried to communicate with my sister. We talked to him and he responded. Laughing where appropriate, a half-smile and several well timed grunts. Certainly promising.

On the flip-side, he only opened his left eye. The right side of his face is noticeably relaxed, and that side of his mouth is not responding. We know that there will always be some paralysis on that side of his body, just from the first stroke. We know that when he's tired, he has more trouble with that side of his body. But this is certainly pronounced, and reminiscent of February/March.

They have also put him back into restraints. For his own protection, but also a source of irritation for him, I'm sure. The idea of him removing his feeding tube is enough to encourage this response, but it's the fear of him reaching for the drain that solidifies the need to protect him from himself.

They believe that he's still bleeding. I think it ties back to the color of the fluid leaving his head. It's closer to red now that it was initially. They called in a "blood doc" to consult, and have postulated that it may have to do with one of his medications. Apparently, he was on an anti-seizure medication that may have interfered with his platelets. What little I remember from biology reminds me that they are key to clotting. So, they've stopped that medication and reviewed all the others for anything that might be contributing to the problem.

As to the future, it's all still up in the air. We need the bleeding to stop. We need the pressure inside his head to stabilize. We need him to adjust to that new pressure. Then we begin the rehabilitation phase again. Precisely what and how much he will need can't be assessed until he is stabilized. If things go well, they expect him to remain in the ICU for another 7-9 days.

Guess I better refill that Dramamine.

An Ill Wind

In the last 24 hours things have taken a noticeable change for the worse.

It's difficult to pinpoint precisely when this happened or what triggered it. Over the weekend, he was confused and certainly slept most of the time. But he was communicative and responsive. Sometime Sunday he became more confused and resistant to the treatment he was receiving in the ICU. He was given medications to help him relax. And he did.

We weren't concerned, honestly we were glad to see him get some rest. This rest continued through Monday, and again, nobody was overly concerned. At least, not until Monday night.

I received a call from Mom this morning, explaining the activities of the previous evening. When the RN came online for the night shift, he was troubled that Dad wouldn't respond to my brother and sister. They were visiting, and he wouldn't open his eyes. He contacted one of the various doctors that are involved in Dad's care, and a scan was ordered.

The scan was shipped off to Australia for review (some sort of night scanning service) and they flagged it for alert. I don't know precisely what they saw, but it led them to the conclusion that the pressure was too high inside his skull.

Several other steps fell into place here, involving more scans, and more consultations with doctors. It was at this point that they surgically installed a complicated system of tubes and bags to release some of the fluid that was building up, increasing the pressure inside his head. I'm told that he was noticeably improved the second that the system was put into place.

All of this is second-hand really. By the time I saw him today, the tube was in place, and he was calm and sleeping. He wouldn't or couldn't open his eyes or talk, but I did manage to hold hands with him briefly. He's largely unresponsive to stimulation, but does occasionally make some sort of movement in an apparent attempt to become more comfortable.

I don't know what to say, except that I feel a little bit like I've been blind-sided by this. While nobody expected the second (or first) stroke, he was still himself most of Friday. Even Saturday and Sunday I was confident that he'd be home soon, and would be able to resume therapy where he left off. The hospital staff seem confident, if not pleased with themselves, that they caught this recent situation and acted accordingly. I'm sure they have, it's just a little bit shocking to see him deteriorate so quickly in the last 24-36 hours.

Another long day

I got another 2AM phone call.

I hesitated to go in. That's how confident I was that this was just another severe headache. Hesitated, but finally woke up enough to realize that I really needed to go in and support both Mom and Dad. My brother and sister came as well.

Dad was coherent, but nauseous and clearly in a great deal of pain. It didn't take long for the CT scan to confirm our fears; Dad has had another stroke.

It's in a similar area of the brain, and it's also hemorrhagic. We hoped for something minor, but the blood spread very quickly and to a wide area. Having looked at the results of the scan, it was odd to see Dad still so coherent and capable of movement. As of this writing, he is still able to move his limbs upon request, and although very groggy, capable of communicating.

We've now talked with several physicians associated with his care at one level or another. I can sum up the current situation by saying that we're in a holding mode. Nobody thinks surgery is called for at this time, the bleeding seems to have stopped sometime this morning. Good news. It would appear that the bleeding hasn't caused substantial damage over what was done with the first stroke. More good news. They won't consider this incident to be over for 48 to 72 hours. Worrisome news.

For now, Dad is in the ICU under constant monitoring. They are keeping him pretty well medicated between the anti-nausea and pain medications. The idea isn't to put him so far under that we can't continue to monitor the situation, but to provide him with enough relief that he's able to sleep.

Now, we wait.

Infrequent updates

For those of you out there still following the news on Dad, that don't necessarily get to see him in person...

In short, he's really doing very well. To all of you that told me personally that he would walk and talk again, you were (and still are) correct. Granted, our expectations dropped to the point that what we think of as walking and talking aren't necessarily where he was before the stroke. Regardless, he has made monumental strides (literally) in regaining his sense of independence and self.

In more detail. His gait is not without its shuffles and missteps, but he is walking without the assistance of so much as a cane. He is gaining confidence daily, and aside from the occasional bout with balance control, he is walking on his own. He remains frustrated with his conversational skills, but even in this area he has made continued progress. Over the last few weekends, Dad and I have spent several afternoons together. No projects, or crazy timeframes to meet, just spending time together, chatting and watching TV. For my side, it was time well spent, and time I'm glad we got to spend together.

He continues to fight through unfamiliar aches and pains. I found out only recently that he has never really suffered from headaches. Well, he's suffering now. Not necessarily daily, they seem to come and go. But they are clearly painful, and he's always grateful when they relent. He fights through some level of stomach pain, most likely related to the peg tube he only recently had removed. And then there's his right arm and hand. Sadly, they aren't coming back to the extent of his walking and talking. Really, only moderate progress since his time at the rehabilitation center. The goal at this time, is simply to keep his hand elevated as often as possible to reduce swelling.

I'm not sure where the path leads from here. We're still working on selling our homes and moving forward with some vague notion of where we want to be. Dad and Mom continue to work through the substantial changes in their own lives as they support each other in their own ways. As a family, we have grown. Some growth is naturally more painful than other. Hopefully, we're past the worst of it, and can look forward to an easier existence for now.

Dump the wheelchair

Dad's physical therapist suggested that the wheelchair be stored in a closet somewhere. She argued that he is walking well enough that it really isn't a necessity. He isn't ready for a marathon any time soon, but he can certainly move around well enough to get from the couch to the car, etc. After spending the day with him yesterday, I can vouch for the improvement. Not only has his ability to walk gotten better, but his confidence in his ability to walk has increased as well.

He did take a momentary downturn this week. It looks like a minor infection went unnoticed until his blood pressure dropped during physical therapy. A trip to the doctor, antibiotics, and bed rest seem to have addressed any serious worries for now.

Overall, he's eating better, drinking normal liquids (albeit carefully) and as I said above, walking better. His communication skills haven't increased substantially, although he seems to be settling into a pattern of fewer words or smaller sentences. Not in a bad way, but it is easier for him to communicate what he's trying to say.

His occupational therapist has actually given him some homework. Mom will ask him to point to an object in the room, and he's supposed to follow directions. And this simple request probably highlights best where he is at this stage of recovery. He really has a tough time following that sort of instruction. They are working on it, and I'm sure time and a lot of hard effort will pay dividends.

We descended on Mom and Dad's house like a swarm of angry bees today. The mission was to move as much of the furnishings back into the house as is possible. Mom was able to get the carpet installed this week, so no more excuses. With everyone's help we were able to get an office setup again, as well as a few key pieces throughout the house. In this case, key really just means heavy. My muscles are relaying that message quite clearly this morning.

So, the POD is empty, the garage is full, and the house looks like people actually live there. Mom still has her hands full with picture hanging, general cleaning, filling the closets and decorating, but there shouldn't be a lot more heavy lifting. We have tentative plans to borrow a bed from my sister tonight. We'll see how things go between the forecasts rain and the aching backs.

Surprise visit

Mom and Dad made an unplanned visit to my house on Sunday afternoon. Unplanned, but certainly welcome. While we sat and talked, my girls were able to catch them up-to-date on all of their girl scout weekend stories. My youngest had been unavailable to help on Saturday, so she provided us all with entertaining stories.

Most significant during this trip was the absence of Dad's wheelchair. He walked from the car to the living room. Later during their stay he walked from the living room to the kitchen for a quick dinner. He isn't ready for the 100M hurdles, but he's really doing quite well. Balance and lifting his right foot higher are still his biggest obstacles, but he's proceeding very nicely. He is using a 4-footed cane and a little help from one of us, but he can move at a slow pace without too much assistance.

We kept them longer than they intended, but I understand they were still able to pay a visit to my sister after leaving our house.

The best laid plans...

My eldest daughter and I started with a filling, but not so healthy, breakfast at the Cracker Barrel. After that, we made a quick stop at the storage unit and rearranged all the 'stuff' until it was safely and much more efficiently stored towards the back of the space. Feeling rather good about ourselves, we took off to Mom and Dad's house.

In all fairness, we probably assumed too much. I was planning on taking as much as possible to the storage unit in hopes of making their house easier to sell. Mom was thinking more in terms of emptying the contents back into the house. You can imagine the disagreements and confusion this caused until we all sat down and talked about our options.

Mom has a good point on the need to move back in. However, she also needs to get a couple loose ends wrapped up before we can make any significant progress on bringing furniture back into the house. She's going to work on that this week. My brother conceded that he could use the help in wrapping up the lingering items around remodel. He really deserves kudos for several reasons. Primarily for the devotion and effort he has put into making things right over the last few weeks. I'm sure it's been a difficult battle and I respect everything he's done to finish it. With a little help, I think all should be complete in a short time frame.

At the end of the day, we cleared out enough that Mom felt better about her current situation, if not great. We agreed to reconvene next weekend and try again, hoping that enough will be done on the house that we can actually empty it all out. I admire how Mom has endured and what she has accomplished over the last few weeks. She has compromised, conceded and used creativity to provide a safe and manageable situation for Dad, and still managed to retain her dignity and sanity.

Throughout the day, Dad was in the middle of everything. Sometimes pointing out what needed to happen, sometimes simply intervening between "lively discussions". We may not have always understood what he said, he may not have been able to walk everywhere he wanted to go, but he was clearly on top of the whole process.

Lunch with Mom and Dad

Not so many updates recently. Sorry about that, with Dad home I've gone back to working on my house and haven't been the diligent son/blogger. Let's see if I can do a little better this week.

After a call from Mom, I stopped by McAlister's and picked up a light lunch to share with the folks. It was pleasant, relaxing and something I plan on doing more often. In hopes that you never need the information, baked potatoes are almost the perfect food for somebody recovering from a stroke. The food sticks together, helping keep everything on your fork. It's easy enough to chew and swallow, and it still has flavor.

So are cookies, by the way.

Getting out of the house

Apparently, after 6 weeks of fighting to go home, it only takes 3 days to want to get back out. At least, that was the case this Friday. We all met at the Olive Garden and had a quiet and enjoyable lunch. Dad has been fighting to regain an appetite the last few weeks, but did well with a plate of fettuccine alfredo. He's trying to get beyond the thickened liquids, but clearly still has to be careful with water consistency.

24 hours later, we celebrated my youngest daughter's birthday with the extended family. A houseful of guests including Dad. He seemed genuinely happy to be at the festivities, but had to work through over-stimulation with all of the noise and commotion. Through no fault of his own, I think he might have been the real hit of the party. He was certainly greeted warmly by everyone.

Overall, he's clearly much happier than he was prior to coming home. And that's understandable. I'm not sure that he's progressed substantially in terms of independence related to mobility, and his ability to handle most day to day tasks without assistance. On the flipside, he's resting and eating better. By better, I should qualify that it isn't necessarily the nutitional quality of the food that's improved, but his attitude and appetite.

Things are only starting to gear up as it relates to continued rehabilitation. He received a visit Friday from the home health folks. He's still getting around in the temporary wheelchair, and my brother has helped tremendously with an improvised ramp and other necessities. I'm confident that as his strength continues to improve, he'll make more gains towards independence.

Dad goes home

6 weeks, 3 days and 12 hours after leaving for the emergency room, Dad has returned home.

Ironically, it wasn't to great fanfare or celebration. We were strongly encouraging him to stay in a 24 hour nursing facility for another few weeks. Doctor's orders, and our own concerns in terms of his care.

He reluctantly gave the facility a 24 hour try, but refused to stay any longer. So we scattered in all directions to locate a wheelchair, shower seat, etc., to assist in his home care. Mom is bravely adopting the role of live-in nurse, knowing full well that she still has a home remodel to finish, and a career that has been set to the side for the last 6 weeks.

My younger brother has agreed to help out during the day, in hopes of giving Mom some time to attend to business, as well as her own mental health. I'm sure that we'll make things work, and confident that as time goes on, Dad will need less assistance.

I'll admit that he is already much happier than I've seen him since this all began. Happier, more content, relaxed and even healthier. We all converged on the house this evening, kids in tow, and talked with him as time allowed. As we left the neighborhood, it was my 12 year old that spoke up and said, "I like Granddad better at home."

Me too honey, me too.

Thinking ahead

It's probably Dad's fault, now that I think of it. The fact that I can't get into any situation without automatically running through all of the possible scenarios, and what I should do, or how I should react in each case. Maybe everyone does that, I really have no clue.

In any case, from the moment that I thought Dad was out of the woods, I've wondered how we would care for him going forward. How far would he progress, what level of care would he need, and how would we, as a family, provide that care.

Towards the end of last week, my wife, daughters and I came to the conclusion that the only logical solution was for Mom and Dad to move in with us. To make a long story much shorter, we are in the process of building a new house. Same basic floor plan, same neighborhood, same builder, but that's another story for another blog.

The basic house isn't overly large, somewhere in the neighborhood of 2700 s.f. It's a 2-story home with 4 bedrooms, a study and a 3-car garage. The basic idea is to connect another structure through the breakfast area. We can add over 1,000 s.f. without infringing on any of the building lines.

The addition should have a sizable master bedroom, bathroom and closet. All accessible by wheelchair without feeling like a hospital room or nursing center. Additionally, a full sized living or great room to allow Mom and Dad separation if the chaos of my own family sometimes gets to be too much. All of that connected back to the main house via a wide corridor filled with floor to ceiling windows.

There's still a lot of work to do. We haven't sold our existing house, and Mom and Dad were working towards doing the same thing. They were in the throes of a complete remodel when Dad was stricken with the "brain attack". My brother has done an admirable job of trying to complete the remodel on his own, and the house is really getting close to being market ready.

After visiting with all family members the last few days, I think we're all comfortably in agreement on the plan. Sell both houses first, my family will move into our new house as planned. Hopefully, we'll have all the plans done by the time we close, and can begin construction on the addition immediately. If we're lucky, and all goes well, then we should be prepared for Mom and Dad within 6-8 months. The interim will be a little tricky, but I think it's made more manageable with a long-term plan that everyone believes in.

For your viewing pleasure...

Thought everyone would enjoy a quick video of Dad. One of Dad's nurses caught the footage on his cell phone for us to enjoy. If you can make it out, you can see the hemi walk in Dad's right hand, and some sort of strap that the therapist is using for safety around Dad's waist.



I'll provide another update soon, but I wanted to get this footage out as soon as possible.

Therapy for all

Dad, Mom, my younger brother and I met with the therapists today. A sort of "round table" discussion on Dad. Sort of.. because the table was actually rectangular, but you get the idea.

Leading off the discussion was Ruth, the nurse or assistant to Dad's doctor while at Jim Thorpe. She said that everything relating to his medical condition was good. She went through a variety of medications explaining why each was prescribed. It's kind of funny to think of Dad on Ritalin, but it's actually a common prescription for brain injury patients. Helping to concentrate, etc. They also have him on anti-seizure medication. While I'm unaware of Dad suffering from any seizures, it's fairly common for brain injuries.

In terms of the anti-seizure medication, it makes me think of that old joke. The one about the elephant repellent system. Guy goes on about how well it works, other guy says something about there not being any elephants in town, first guy remarks about how well it works.

Second up today was the physical therapist. Dad is walking better, although he clearly (as is to be expected) is suffering from muscle atrophy on his right side. He actually walked 200' with a hemi walker. I think it's a hemi walker. It's smaller than what you typically picture, and designed for someone using only one arm. So, the 200' is good, but Dad is still largely ignoring his right side without encouragement. They kept referring to it as motor planning, awareness, etc. With a little help, he can get out of his wheelchair. With a little more help, he can walk reasonably well, but not quite well enough to go unassisted.

The really good news at this point in the meeting was the consensus among all of the center employees that Dad would continue to progress for another 6 to 12 months. They couldn't say how far he would get, or what limitations would remain. But it was very good news to know that he hasn't reached those limitations yet.

The occupational therapist "Doni" was up next. She really emphasized the "re-directing" and the motor planning issues. Things as simple as brushing your teeth. She said that just earlier this week, he could brush really well, but got confused when he was told to rinse. He'd just start brushing again. I'd point out that he's really really stubborn, but this is related to the stroke. Either way, he's now rinsing without much confusion.

All-in-all his ability to take care of his own hygiene needs is improving better than expected. He's determined to do everything himself, however he'll always need some assistance, or at least special accomodations as it relates to showering, etc. We've all seen those shower seats, or something like them. He just needs a shower that's easy to get into, and then some safe way to sit down while he bathes.

Kimmie, the speech therapist followed occupational therapy. She said that his cognitive expression is suffering right now. Same stuff I've been saying, only more technical. He gets frustrated with his inability to put his feelings, wishes or thoughts into the right words. He is saying many more 'real' words than the jargon he was using at first. She encouraged him to focus on using one or two words to convey what he wanted to say. Oddly enough, he still insists on forming complete sentences.

I'll insert this as it's appropriate for the context, but my eldest daughter called shortly after the meeting came to an end. She does this everyday when getting home from school. I used the opportunity to put Dad on the phone. He talked to her only briefly, but I was surprised how much of it I could understand. What really made me smile was the bubbly voice on the phone when Dad handed it back to me, "DAD, I COULD UNDERSTAND EVERYTHING HE SAID TO ME!" Her enthusiasm was infectious, to say the least.

As a wrap-up, the case worker "Ruth" ran through their recommendations. They still recommend a 24-hour skilled nursing facility at this time. He's close, but still needs help with most daily functions. He shouldn't be left alone, for sure. If not a 24-hour facility, some sort of an adult daycare, or in home aides to assist with his daily needs.

Dad disagrees, and wants to go home immediately. The center is keeping him through the weekend, so we need a definitive plan by Monday. I don't really know for sure what we're going to do at this time. We plan to talk about it more the next few days. It was a good meeting, and certainly encouraging to the family, if not a little disappointing for Dad himself. He still wants to go home. Obviously, sooner than later.