Tuesday, Tuesday. So Good to Me...

What???

THAT doesn't make any sense.

Well, it was Tuesday anyway. And Braum Burgers??? Stick to the fabulous shakes. Dad and I both suffered mightily last night. And today was the two-week post discharge appointment with the surgeon, Dr. Platt.

1:30 found Mom and Dad just finishing lunch. We still made it out of the Apt and were on time at Southwest Diagnostics for an X-ray. At 2:00 sharp we walked into Dr. Platt's office, new photo in hand ready to see the doctor and met the friendliest receptionist ever. She remembered Mom from when they saw Dr. Platt about operating on Mom's lung way back before anyone ever thought Dad might have a problem with a leaky valve. (Just about three months back.)

After a short wait we were whisked into an examination room and promptly greeted by Dr. Platt. The infamous 'man of few words' (we joked about it on the drive over) greeted us warmly. He examined the X-ray, pointed out the faint image of the new valve and showed us where the aneurism used to be. It was a clean  picture, the lungs were clear, everything looked good. He examined Dad and again, everything looked good. He noted that the mitral valve is slightly leaky, but it was that way before the surgery and he did not think it was likely to cause problems. He removed the remains of Dad's stitches.

Dr. Platt again reminded Dad that recovery takes time at his age, but that age was not an excuse not to push rehab. He wants Dad to walk continuously for at least 10 minutes every morning. Speed or distance is not important, what is important is the continuity. If he can build and eventually go for longer times so much the better. He said he would demand 30 minutes at this point for younger patients, but feels 10 minutes would be good for Dad.

What's more, Dr. Platt wants Dad to do arm lifts for 10 minutes with 2-3 lb weights. This can be done sitting in the living room and can be done in the afternoon. Again if he can build to longer periods, so much the better. Speed and number of reps is not important. What is important is doing it continuously for 10 minutes. Both of these exercises are in addition to what Dad might do with the rehab trainers.

He said he'd received info from Southwestern about Mom's treatments and asked how she was doing. He was quite loquacious for a man of few words. Dad goes back in three months. The receptionist asked how busy we would be at Thanksgiving. (omigod!)

As were leaving, we visited with the next patient. A 'young man' (well, younger than me!) was sitting there with his parents holding an X-ray just like we had been. We had noticed them downstairs at Southwest Diagnostics and here they were just like we were. The Dad of the group asked Don how long it had been since his surgery then talked about how much better he felt now. He he remembered being fresh out of surgery like Dad, weak and with a walker. He told Dad that it took a lot of hard work, but to stay with it. The work will pay off in the end. I hope Dad was listening and remembers.

So Dad is at the end of his post-op appointments. He is weak, but healthy. He is frustrated by his condition, but at this point it is going to be up to him to make himself do the work to rehab. Or not.

Mom has a friend lined up to take her to her treatment next Thursday. On the home front they really don't like the home nurse. She's being tough on keeping track of fluid intake, rules and regs that Mom and Dad both like to think don't necessarily apply to them. They've also had problems with the help supplied by Tami. Things just don't get done the way Mom wants them done. Even instructions aren't carried through just right. (No kidding. I've been trying to do that for sixty years!)

Getting along with home care help is going to be the next big issue.

A Big Monday

Sunday was a very long day. After leaving the hospital around 2pm, I didn't get away from the Apt until 7. Helen was still there, I don't know how much longer she stayed. So it was definitely a late supper for the parents.

Monday was going to be a busy day. We had an 11:15 appointment with Dad's cardiologist at Presbyterian Hospital and then needed to be at UT Southwestern on the other side of town by 12:45 for Mom's 1 o'clock radiation treatment. The gears of heaven were going have to be well oiled and turning smoothly!

Dad slept great Sunday night and started Monday strong out of the gate, but immediately ran out of gas and  was totally exhausted when I arrived to take them on our grand outing. But they were ready and zipped out of the Apt. and just like that we were at Dr. Musselman's. After a brief spat over whether we really had to fill out the medical history forms (Mom said she been told that it wouldn't be necessary) we sat down to fill out the forms while we waited. Before she was finished, we were whisked back to an examination room and after a quick check of the vitals and an EKG, we waited for Musselman.

And waited and waited. Dad gets really worked up in these situations.

"Come on, come on, come on!" "Darnit why won't they come?" "Jeez! What can be taking so long?" "Come on, come on." "Oh, come on, Doc!"

This time Mom and I shared his sense or urgency as there was very little time between this appointment and her treatment. We were just about at the time when we would have to leave Musselman's to get to Southwestern Medical . We were all ready to get up and leave when Dr. M arrived. The sense of urgency seemed to vanish!

He asked how Dad was feeling and listened carefully as Dad elaborated. Then he carried out his exam and pronounced judgement. "You know, you're 86 years old and this was big, major surgery and recovery is going to take time. You are really doing great." Not the first time we've heard that drill! Maybe it's the bottom line truth. The problem is that Dad has a very hard time accepting it and an even harder time accommodating the changes in his life necessitated the facts of his condition.

"Sleep. Eat. Exercise. Rest." Don't try to do too much, but try to do a little more every day. You will have good days, you will have not quite so good days. Slowly you will get very close to where you were before."

I asked about the stroke diagnosis. Dr. M did not show much concern. He said that it's common after open-heart  surgery for tiny clots and particulate to circulate and get stuck. He made the aortic valve sound like a rusty old piece of pipe from under the sink! And he said that the recovery regimen for the mini-stroke is the same as recovery regimen for the surgery. "Sleep. Eat. Exercise. Rest."

Dad goes back to Musselman in a month.

Then we were out in a flash and made it out of the office, down the elevators, into the car and and across town into the valet park at UT Southwestern's Radiation Oncology Center in about 30 minutes, right on time for Mom's appointment, thank you very much!. She hopped out of the car, said hello to her new friends at the valet park and went inside. (I think this sense of independence and  her ownership of her treatment process gives her strength.)

And Dad and I scooted over to Braum's for Shakes and Burgers. He had a la-a-r-ge chocolate shake, a chili-cheeseburger and fries. Was quite dignified as he ate the burger with knife and fork! The shake was made with hand scooped vanilla ice cream, chocolate syrup and milk. He drank every drop.

We got a monster shake-to-go for Mom and went to pick her up. Dad went into the building, saw the huge David Bates painting and we were looking at the tall orange Chihuly in the Seay Building lobby, where Mom wandered and met us. Then it was a longish walk through the treatment center and back to the car.

Dad had started out the day exhausted!

The shake picked him up but he went crashed on the way home and went straight to the bed.

A BIG DAY!!!

googling the pons

Once again, can't say thank you enough for these postings, Dave. I woke up this morning wondering whether Dad was released yesterday; if so, what had actually been discovered at the hospital and what changes to protocol were being made; whether the logistics for getting Mom and Dad to doctor appointments were worked out...and when I checked the blog, all the info was there. I called and talked to both of them this morning. Mother sounds exhausted. In the end, after the Durans left, she was too tired to cook the family healing menu, and they had soup. But when she woke up this morning Dad was up, showered and starting to cook breakfast. There was some altercation over whether he should salt his eggs.
You'll undoubtedly hear all this when you see them today.
Anyway, I told Mom not to worry about salt and dietary restrictions too much right now, except for stuff like grapefruit that interacts directly with meds. Dad needs calories more than anything, and their diet isn't salt-heavy, anyway.
I tried to find something about strokes in the pons; not a lot. The most interesting info comes from a less than triple-A source—a UK-based net doctor board. So, to be taken with a grain of salt. Ha ha. It did have some interesting stuff, in quotes below. The only other interesting factoid I saw had to do with how afibrillation causes blood clots, which seemed relevant, but there wasn't much info beyond that statement.
And your rant is dead-on: If doctors would take the fucking time to explain what is going on, why they are prescribing what they do, we would all be healthier.
xxoomm

"I think pons stroke is a difficult term to find on a search because it often seems to be categorised within the more general descriptions of brainstem or vertebrobasilar stroke.

The pons is part of the brainstem. It's the lowest part of the brain that connects to the top end of the spinal cord. It's an important and densely packed area.

The pons contains many bundles of nerves that carry movement and sensory messages between the brain and the body.

It also acts as a junction box for all the nerves employed in coordinating movement and balance within the head, neck and body.

Because there are so many important structures within the brainstem, one small area of damage due to stroke can have wide-ranging consequences.

The exact symptoms depend on which biological 'electrical circuits' and junctions lose their blood supply.

This depends on which of the small blood vessels in the area (branches of the vertebrobasilar circulation) becomes blocked.

The symptoms can include:

• difficulties with balance (ataxia)
• dizziness due to vertigo
• uncoordinated eye movements
• problems with swallowing and articulating words
• numbness
• weakness in one half of the body.

It's not uncommon for people who've had this sort of stroke to feel sick (nauseous) as part of the loss of balance.

Recovery depends on the extent and severity of the initial stroke.

Home Again, Second Time Around

Dad was discharged after lunch today. Seemed a little weaker then when he went in, but the hospital is no place to rest. Did get some results. Learned a thing or two. A couple of meds were changed. A couple of meds were added.

The big news came from the neurologist though it's been tough to find out anything. (I wish I had been there to see the neurologist. Mom and Dad had a hard time understanding what the doctor had to say.) But the diagnosis was in the the discharge orders.

"A small stroke in the pons," it said.

"What is the pons," I asked.

No one seemed to know. Googling tells me that the pons is the brainstem.

Exactly when this event occurred is difficult to determine. I think it could have even have been before the surgery, but what do I know. Yes, stroke sounds major to me but nobody's playing it up at all.  I must say that I am not surprised. Dad's grasp has been fuzzy since the surgery. I'll talk more to Dad about it tomorrow. Also Dr Musselman. More to report then.

Dr. Musselman radically cut down on the Amiodarone, which was the prime suspect for causing the nasty side effects. Since it controls the fibrillation of the heart, it's just as well they took it down under observation in the hospital.  If you read about the medication, you would find out that hospitalization during withdrawal is common.

And a small rant on drug administration. I have always found that knowing "why" helps me to "do." (I'm sure Mom would disagree.) For instance, knowing that a chemical found only in grapefruit causes wide variance in the potency of some drugs helps me understand why grapefruit is often singled out as something to be avoided. When the drug controls heart rhythms, it's time to pay attention. In particular, the body is usually only able to absorb 22-95% of the amiodarone in a given dose. The higher absorbancy is achieved when the drug is ingested with food. Hence the instruction, "Take with food." Following all these micro-instructions would sure make life more complicated!

The neurologist also prescribed two medications to control the tremors in his leg and arm (left side) and they seem to be working.

I spent the afternoon getting them situated, getting the new meds and helping Mom get Dad's pills ready for the next week. Helen made a Central Market run and arrived shortly before I left. Dad wanted ground beef patties and buttered rice for dinner, so that was the agenda for the evening.

Tomorrow Dad has an appointment with Dr. Musselman (cardiologist) at 11 followed by Mom's 3rd radiation treatment. I'll pick them up at 10:30 and the plan is for Dad to go see where Mom goes for treatment, maybe followed by Braum's for lunch, if Dad can last that long.

It will be a long outing.

Saturday Morning: Back in the Slammer!

Well, Dad's worst nightmare has come to pass. He's back in the hospital. Hopefully this visit will be way quicker than the last one.

They ran a bunch of tests yesterday. Some of the results are back. Heart rhythms are strong. Oxygen level is outstanding. Some of his lab counts are low, but that's been known. Basic level of health is good.

One of his doctors, I believe she was the 'hospitalist' was in for the second time today. We were able to give her a better picture of Dad's background which was helpful to her. The prime suspect is the amiodarone which is the drug controlling his heart rhythm. Readers might remember when Dr. Musselman 'doubled' the dose to control the arrythmia two days after the surgery. It was the effectiveness of the drug that made the cardioversion unnecessary. However it does have side effects. The following is from the National Institute of Health:

Amiodarone(a mee' oh da rone)

What special dietary instructions should I follow?

Do not drink grapefruit juice while you are taking this medication.

 

What side effects can this medication cause?

Amiodarone may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:

• constipation
• loss of appetite
• headache
• decreased sex drive
• difficulty falling asleep or staying asleep
• flushing
• dry eyes
• changes in ability to taste and smell
• changes in amount of saliva

Some side effects can be serious. If you experience any of the following symptoms, or those listed in the IMPORTANT WARNING section, call your doctor immediately:

• rash
• weight loss or gain
• restlessness
• intolerance to heat or cold
• thinning hair
• excessive sweating
• changes in menstrual cycle
• swelling in the front of the neck (goiter)
• eye pain
• swelling of the hands, feet, ankles, or lower legs

Sounds like it really covers Dad's symptoms. Dosage starts high and then tapers and eventually stopped. The removal process is carefully monitored to be sure arrythmia does not return.

However she was unaware of any neurological component to Dad's work up. I did mention that Wiggans had discussed it and that I thought someone had mentioned it yesterday. She said she's look into it.

So,  breakfast was bad. He's on what's called a grey diet. How great can that be? Someone should smuggle in some salt and pepper to go packets. That would really brighten his life, believe me. Just tearing open the packets will put a smile on his face!

A Friday When I Couldn't Have Been More Wrong on a Thursday

"The good news is that life in the Apt. seems to have reached a plateau of sustainable (in)dependence."

Really? Did I write really write that? When?

About 24 hours ago. What was I thinking?


Yeah Dad felt bad Thursday, but it seemed like they were blaming it on the Ensure. Mom had the go ahead to double her diuretic. but evidently Friday was a really rough day and they wound up going to the emergency room.


Which Dr Wiggans kind of urged them to do when we saw him Friday a week ago. Readers should remember that Dr Wiggans strongly wanted to check Dad in the previous Friday afternoon for a three-pronged evaluation. 1. Check the medication levels and interactions.  2. Neurologic exam (rule out minor stroke.) and 3. General cardiac evaluation. He said that if Dad reconsidered at any time or if he felt worse to go and check in through the emergency room. Again, this was LAST FRIDAY. So, for Dad to decide a week later to go to the emergency room should not be a complete shock. No doubt the symptoms are pretty much the same as our visit last Friday: 

"So while we were waiting I asked Mom and Dad if we had our questions ready for Wiggans and they had them down:  Blurry and occasionally double vision, confusion, depression, anxiety, increased tremor in the left arm and right leg, drooling, he doesn't hear own voice normally, no appetite, difficulty sleeping."

His appetite returned somewhat except for the Ensure episodes and the drooling is better, but other than that everything is pretty much the same.

Obviously I haven't seen them in several days and that's my fault. If anyone else had another perspective or had concerns I was not aware.

I'll talk to Mom and go by and see Dad in the morning before going to work. Hopefully I'll be able to post a report from the store before we get busy. We have over 700 people signed up to come to a Food Truck Festival tomorrow night in our parking lot. Yikes!

Thanks to Helen and Will for staying through the long waits today and to Susan for bringing dinner to the hospital.

Thursday Evening Check In

No, not like that!

I just meant that I checked in with Mom last night for the first time since Monday. And everything is OK.

Mom took Dad to see Wiggans Wednesday. I forgot all about it and never made any arrangements to take them or go myself. Mom can't lift Dad's big four-wheeler SUV of a walker so he used her three-wheeler. Don't know if they carried Mom's oxygen in the basket. Susan thought it would have been so romantic if they had. He still thinks Dad's struggles to recover are tied to over medication so he stripped off a couple more prescriptions which I think is great news.

Dad's also discovered that in addition to tasting vile, Ensure makes him gassy, farty, bloated and cranky. So I think he's done with that. Eat up D-Don, be strong!!!

Frieda (sp?) came and sat with Dad while Annie Sparks took Mom to her treatment yesterday. The treatment went smoothly and quickly. Apparently a lot of the time Monday was still set up. Yesterday they had all the proper coordinates locked in and took the machine up to warp speed right off the bat. Still don't know how many more treatments are left. Mom remembers Dr T telling her five sessions, but only three treatment sessions are on the books, the last one being next Monday. I'm not sure where the misunderstanding is coming from, but I won't be surprised if the doctors are right. (No disrespect, Mom!)

That's all the events on the horizon until next Monday, when Dad's appointment with Musselman and Mom's treatment session are scheduled dangerously close together. Mom thinks we can all do both...

The good news is that life in the Apt. seems to have reached a plateau of sustainable (in)dependence.