New Room, a bit stronger. . .more of the same

Dad got moved to 2007 at Brookstone today. He was a squatter in a private room at the "shared room" pricing, and there was a patient coming in that was going to pay for the extra $35/day for the privacy. . .so off he moved.

Dad is sounding a bit stronger on the phone, and is a bit more alert thanks to the Adderal stimulant that was added back into his daily medication list. He's still confused on what all he can do (yesterday he told me that he was walking for 20-30 minutes), when in reality he did NOT go that long.

He is getting stronger, but still a long ways away from being able to go home. Visitors are ALWAYS welcome - afternoons, early evenings are best as therapy now is in the AM.

Getting stronger - slowly but surely

Apologies for the lack of posts - been quite busy with a launch of a new program at work. Now that it's live, a bit of a breather to allow us all to get back to the normal break-neck pace we're used to. :)

Dad is slowly getting stronger. So hard to see (and hear) him in such a weakened state, but he's improving every so-slightly. They're getting to know him at Brookstone (for some of the wrong reasons - like getting up in the middle of the night on his own, and then being too tired to get back into bed). They've learned that the bed alarm needs to be "ON" for it to alert them when he's trying to get going on his own.

They're doing all kinds of rehab therapy for him to help him with his balance, strength on the left side (and his right), and just overall endurance. He very much needs the verbal cues to focus on keeping his leg straight on the left side -- without it buckling -- and when he is doing the balance bar, which consists of holding a long pole horizontally and the idea is to keep it level -- he needs to be reminded to keep the left side up.

The therapists are also starting to work with him more in the morning hours, instead of afternoon, as he's stronger in the morning and able to do more than when the afternoon hours hit. He still keeps his eyes closed most of the time -- and he says he can't really help that. He had that before surgery also. . .but that improved about a month after rehab started the first time. Hoping that recovers this time as well.

The best news around his endurance is that he's able to walk a distance of 85ft (with assistance), and only has to stop once to rest. Let's not forget that he couldn't walk on his own without two or three helping him just a few weeks ago.

It's going to be a long haul, but progress is being made. Slowly but surely.

And the latest update from Joanne down in Arizona is that over $1020 has been raised for the "Blockin' for Butch" campaign! Sincere thanks to Joanne and to all of the donors for helping raise money for cancer research!

Having a better start to the day - a bit more endurance

The report out of Omaha this morning was encouraging. Dad made it through his morning PT, in addition to having a shower and lunch, all without needing to immediately go for a long nap to recover his strength. He was cognitively "with it" as well, introducing Tracy and Granddaughter Emily to his friends in the dining area.

Tracy was able to get him back to the room and back in bed without assistance. While Dad isn't ready to go for a walk on his own, he's definitely stronger. The nurse even said that he's normally wiped out by noon, so for him to still be going fairly strong after lunch was a good sign.

More this weekend as I get reports from Mom and Tracy, as well as talking to Dad myself.

Back at Brookstone - tired from the move

Dad got back to the rehab facility around 3:00. He's all cleaned up, although someone did a knock-down, drag out job of his chin when shaving him. He doesn't recall a struggle, or a dull razor, but it was one of the two.

The final verdict of why the chest pain? Don't know. With all of the cardio tests coming back the way they should, they've ruled out heart issues. So we have that going for us, which is nice.

The neurologist from the Mayo Clinic called the oncologist yesterday, and reiterated to him that the MRI was stable, and to take another one in 4-6 weeks. No further treatment or changes at this point, although they probably will look at starting to decline his dosage of steroids sooner rather than later. He's still at the highest dose (24mg), and we really don't want him there any longer than he needs to be.

Mom had a bit of a short night at Brookstone, opting to have dinner over with the Huffs, and then go home and just relax. Thanks to our neighbor Gene for sitting at the house while they fixed the phones. Definitely want to get a nomination in for him as "Neighbor of the Year" should that award exist. Everyone has been so nice and helpful - it really is much appreciated.

We're trying to think of ways to engage Dad mentally, since reading books or watching TV is a bit out of bounds right now (we think he's having vision issues and just plain concentration problems). Audio books were mentioned today, so we may try that. Any other suggestions out there?

One more night at Methodist, back to Brookstone tomorrow

Well, all of the tests came back negative today (a good thing). The cardiolite test was completed, and everything came back as it should. However, since the results didn't come back until after 8:30PM local time, Dad bought himself a night's stay at Methodist AND at Brookstone (only one of which Medicare pays for -- you guessed it, the place where Dad actually stays).

He will likely get transferred back to Brookstone tomorrow late morning after rounds, where his bed is waiting for him. There's a waiting list at Brookstone right now, so it's a good thing Mom put down a deposit on the room so they'd hold it until tomorrow.

Everyone is pretty much exhausted, but relieved. Now it's back to getting regular PT to continue to have Dad get stronger so he can go home.

It's 2AM, do you know where your parents are?

Tracy and Mom finally left Methodist after getting Dad settled just after 2AM local time. When they left, Dad seemed quite a bit better than he was earlier in the day, and was going to sleep.

All indications are that he did NOT have a heart attack, but the trouble is that in Dad's mind, he's already thinking quadruple bypass, and asking where he should go to have it done. He called Mom this morning and said that the doctor told him that he had five or six vessels 95% blocked (which, I cannot emphasize enough, IS NOT TRUE!). Poor Dad, just not thinking clear on this, and this is going to cause some undue stress on him and on the family to get him straightened out.

The cardiologist this morning was in and ordered a cardiolite test (which is a chemical stress test instead of using a treadmill).

Pressure is on the hospital to wrap things up before 7:30 tonight, or Mom gets charged basically a night at a hotel rate to keep his room open for his return. Nothing like a nice, easy, restful start to the week!

An all-nighter, now at Methodist, on tap

It appears that Lakeside Hospital is jam-packed, and no beds remain in the ER (apparently some are staying there 48hrs + to get a bed in the hospital), so they are transferring Dad to Methodist where they have a room reserved for him.

They don't like the 'new' type of chest pain he was having, so they want to keep him overnight for observation and additional labs. Since the doctors at Methodist have been following him for a while, they'd like him to have continuity of care. A private ambulance is gearing up to ferry Dad across town, where he will be wheeled up to his room and hopefully a night of decent sleep.

When I talked to Dad tonight while he was in the ER, he sounded very, very tired. He told me that the pain in his chest was very different from a few weeks ago when he was having pain when hiccuping or coughing, as well in a different location. The medical team wants to continue with the cardiac enzyme tests for the full 24hrs and further evaluation by the normal team.

More tomorrow as we find out more. Despite the first round of labs and EKG showing normal, he gets two more rounds of it tonight and tomorrow morning before he's cleared to go back to Brookstone. They're holding his room for him.

Update from the ER: things have calmed down, Dad sleeping

In typical fashion, nothing is showing up on the tests and Dad is sleeping in the ER. They're waiting for tests to come back to definitively tell us that there are no issues with the heart, but Dad is resting comfortably and the doctors don't feel it was a heart attack.

We continue to wait. Chances of Dad returning to Brookstone tonight are high.

Whew.

There are ups and there are downs

Today was a mixed day for Dad. When the bed alarms sounded to the nursing staff, they got into the room to find Dad had walked himself (or stumbled?) into the bathroom on his own. Good news and bad news - good news is, he seems to be getting a bit stronger and was strong enough to get there on his own. Bad news, he doesn't follow directions to call for help as he doesn't quite realize he's not stable enough to do it.

Successfully making it there on his own is NOT the type of behavior reinforcement we're looking for.

He had a pretty good weekend, with lots of visitors and seemingly a bit stronger. Tracy was headed up there with the two youngest grandkids tonight when she walked into the room and asked how things were going, and Mom said, "Well, not so good."

Severe chest pain, increasingly getting worse, has bought Dad an ambulance ride to Lakeside Hospital (the closest to Brookstone) to get evaluated. Not sure if a clot is progressing through his lung, if he's having a heart problem/attack, or if it's just indigestion. He had enough of the classic signs that the nursing staff didn't want to mess around (and neither did we), so he's getting loaded up as I type to go to the hospital.

More as I hear it from Omaha. . .

The weekend has arrived; Dad a bit stronger; still exhausted

Well, the weekend is finally here. Why is it that the short weeks due to holidays always feel longer than four days?

Dad officially has a "First Down" in the Blockin' for Butch campaign. Thanks everyone! It's not too late to send a check down to Arizona to help even further.

Dad's has had a better couple of days, but he's still really, really sleepy. They're looking to restart him on a stimulant to maybe kickstart him a bit for therapy. The good news is that what used to take three or four people (getting him out of bed, to the chair, etc.), now only takes two.

Dad is spending his days of therapy (well, hours right now) on the parallel bars, getting stronger and getting his legs back working like they should. Hard to believe that they need to go back to the basics, but that's exactly what they're doing. He also had his first real bonafide shower yesterday, and he said it made him feel like a million bucks. Progress.

I'm getting inquiries on when is a good time to visit up to Brookstone. The best answer I can give is, "When he's not in rehab." His schedule is changing quite a bit still, so probably the most consistent time he's available is over meal times, or in the evenings (early, as by 7:00 he's very wiped out from the day).

I'm off to try and listen to the Nebraska game on the radio (no PPV here in Oregon) and clean up the house a bit. It was much easier in Omaha when the Merry Maids came to clean. I may need to give a "To Mary, From Mary" present this fall for a deep cleaning of the house by someone other than myself. :)

About the same today, better PT sessions though

Dad's still really tired. He did have a bit better effort during PT today, though, according to the therapists. Hope it will just take him a few days to get back into the routine and he will start seeing benefits from the PT.

The doctors are also looking into adding back in some stimulants like Ritalin or Adderol, as he seems extra tired right now.

Had some visitors the past two days - including the grandkids, friends, and family. Thanks for stopping by to see him! I know it helps him pass the time and brighten up his day to see some familiar faces around.

Day One at Brookstone: "Exhausted."

I talked to Dad briefly tonight - and he sounded incredibly tired. The move from the hospital to the rehab facility really wore him out. He did get settled into his room yesterday, and already has received quite a few visitors.

His routine for the next few days will be Occupational Therapy (OT) to help him get up, get dressed, and cleaned up; then breakfast down in the kitchen area; then Physical Therapy (PT). Back to his room for a rest, and then Lunch, PT, and either OT or speech therapy in the afternoons. He was too exhausted to do the afternoon session of therapy today, but he did get quite a few visitors tonight to pump up his spirits a bit to try and tackle tomorrow.

We'd love to see progress every day, but know that he'll have some days that don't quite meet expectations. It's good to have him focused on rehab and not on regaining stability of blood pressure or breathing.

Go Dad, Go!

Progress! Out of the hospital and now at Brookstone

Dad has been moved to Brookstone Meadows (www.brookestonemeadows.com) in Elkhorn -- a nice change of scenery and activity after two and a half weeks at Methodist. He's in room #2011, and is getting settled. I'm sure he'd LOVE to get visitors to come hang out in the common areas, etc, when he's not getting therapy. We'll know more about his schedule over the next day or two, but he's officially out of the hospital. Whew.

A few updates:

• Dad is fully on steroids in pill-form now; no more IV steroids. Seems to be tolerating that well.
• His PICC line will be in place for another week or two in case they need a quick line or need to access to draw labs, etc.
• He's continuing on the Lovenox (tolerating that well also), and may get back up to Coumadin at some point in the future for blood thinners.
• All labs from the weekend were normal - no outliers to cause any alarm
• Dad will get another MRI in about three weeks to check progress on the hematoma as well as the necrosis.

The oncologist thought that we should know in about a month on how Dad's recovery will be longer term. He's lost a lot of muscle mass and strength, but now feel he's going to make a big step forward with some focused rehab specialists helping him. If nothing else, getting out of the hospital and into "daytime clothes" as the Grandkids call them should help him feel better.

Quite a bit stronger last night, potentially to Brookstone today

Before leaving for the airport yesterday, Dad seemed good. Walking in, he seemed immediately more alert, looked stronger, and even talked stronger. He REALLY wants to go home, and can't understand why he can't just "check out" at night to go home and sleep in his own bed, and check back in to the hospital in the morning.

There's a pretty good chance that he will be discharged to a skilled rehab facility today or tomorrow. I haven't received the update from Omaha yet this morning on what the report was from the doctors coming back from the Labor Day weekend (I got back to Portland late last night).

More as I hear it. . .

Blockin' for Butch

One of Dad's friends, Joanne Neff Harroun, is chairperson for the Relay for Life, Luminaries Committee.  They are planning to light 60 luminaries (maybe more!) for Dad on Oct 16th during the event under "Blockin' for Butch".  The luminaries represent "10 yards" or a first down.  They will burn all night long as relay teams walk around the track around the football field.  The call has gone out to his St. Pat's High School Class of 1962, but I thought I'd promote it a bit on the blog as well.  

The plans are to have luminaries around the high school track in memory of someone lost to cancer, in honor of someone still fighting the battle, or a survivor.  A donation of $10 to the American Cancer Society will purchase one luminary.  You can send a check made out to the American Cancer Society directly to Joanne (address below).  We're looking for a "first down" for Dad, which would mean $600 in donations.

Joanne Harroun

16228 West Lago Verde Way

Surprise, AZ  85374

A call for visitors. . .

Labor Day weekend -- nice cool weather, great football games in Lincoln, and birthday #3 for Grandson Sam.  Unfortunately, Dad is not able to enjoy any of these things as he hangs out in the hospital for a while longer.  

As he's starting to be a bit more alert and aware, he's also starting to get bored and looking for company in the room.  He's not able to read or type on a computer right now, and watching TV doesn't really interest him. . .so it's all about the conversation.  

If you have any interest in stopping by, Dad will be at Methodist (room 505) for a few days yet, and possibly longer.  I know he's love to see you and make the time pass a little bit faster (even though he really doesn't have much of a concept of time right now).

Mom thought Dad looked pretty good last night, and they even ordered Valentino's pizza to be delivered to the room for the Saturday night dinner.  Not a lot happening this weekend, just more rest and some PT to continue getting him stronger.  He likely will either be evaluated for in-patient rehab again early this week, or will be discharged to Brookstone (likely) where they will work with him to get him stronger and back to a somewhat normal course of events.

Murphy's Law has nothing on Mary's Law

You knew it would happen.  The Mayo Clinic neurologist called my cell phone as it was sitting in a bag of Uncle Ben's rice to dry out some of the components (long story, but my phone got wet yesterday).  He said really no change in the MRI from a few weeks ago, and that he would try to catch me next week when he was away from the office.

Dad had a pretty good night, and even made it up to the chair with one other person.

Off to the game now, Mom's heading to the hospital.  More later tonight upon her return.

Still in hospital, seems stronger today

End of a long day, and I'm officially fighting a cold (I'm the annoying sneezing person at the end of the table), so this won't be too long.

Long story short - last night the nurse confirmed that they were tapering Dad down on steroids (from 24mg to 18mg yesterday, down to 12mg today).  Well, the admitting doctor (our oncologist that we LOVE) was not happy about that, so he was going to make sure that Dad was still on the high dose, but look to get him away from IV steroids and back to pills in the next several days if at all possible.

He also said that he was NOT going to discharge from the hospital for several days, likely next week to a rehab facility (either in-patient or separate like Brookstone).  Bottom line - Dad is not ready to get out yet.  He also is going to talk to the neurosurgeons about adding some low dose blood thinners back into the mix (lovenox) to start battling these blood clots now that the bleed in his head is stopped.

This afternoon and tonight Dad seemed stronger and a bit better color.  He made it even walking (with a LOT of help) from the bed to the door and back to bed with PT today.  Grandson Dillon came up tonight as well.  Went STRAIGHT for the ice cream freezer on the floor and helped himself (and Grandpa) to some ice cream.  Dad perked up a bit when he was there, which was good to see.

I believe in the "Full Moon Effect"

I have ever since I worked as a tech in the University of Nebraska Medical Center ICU back in the mid-90s. There's something to it. I think it's working the magic on our family right now.

Dad didn't have a very good day. He looked pale tonight, was very lethargic, and not making a lot of sense about the things he was talking about. He did wake up a bit for dinner - which he inhaled, but then got sleepy and starting dozing off before we even left the room. He did get a brief visit from baby Kaitlyn tonight - and you should have seen that little girl turn her head towards Grandpa's voice when he was talking to her. She wasn't exactly in top notch form, as she had just returned from being diagnosed with a double ear infection; but she still smiled and really focused in on her Grandpa.

We still don't know what the plan is for tomorrow. Brookstone did come up for an evaluation, but he barely answered questions and didn't respond very well for the nurse. Based on how he looked today, I'm not sure how they can discharge him from the hospital. . .but he's stable medically (we think) but just not strong at all in physical or cognitive functioning.

Tomorrow will likely be a whirlwind of a day; or it could be quiet. Who knows. Considering it will be a full moon, I'm expecting chaos.

Unanticipated flurry of activity

Just walked into the hospital after having had a tour of Brookstone in Elkhorn (a skilled facility to help rehab patients to get them back to where they need to be). All of this was triggered by some unplanned talk from the hospital late this morning on about how Dad did not meet the criteria for in-patient rehab and would need to be discharged to another facility until he is strong enough to get through in-patient rehab.

Well, that was all news to us. First of all, Dad in the mornings is not good at all. I think they did the evaluation quite early this morning, and in all honesty, I'm not sure I would qualify if put throught the tests at that hour. Anyway, so it was recommended we look into Brookstone (out by Mom and Dad's house), so I buzzed over there to get the full tour and talk with the staff there on some of the question around what they would do there, as well as more information around the costs and what insurance will cover.

All I can say is this: if you can get good long-term care insurance, get it. Yikes. It's expensive without it.

Anyway, now back at the hospital. They're in the room with Dad now, so Mom and Grandma and I stepped out to the family room. Had a good chat with Jack Kirkwood (ran into him on the way into the hospital), and now waiting for the room to open back up. May be as early as tomorrow that Dad gets discharged. For those that know me at all, you realize I like my expectations managed. Well, the expectation that Dad would get out tomorrow was not set. . .ugh. So we're all running around trying to get some loose ends wrapped up in preparation for the possible move.

I'm hoping that they will re-evaluate Dad for in-patient rehab yet this afternoon thinking that he could qualify. If not, though, we've got the plates spinning in a couple of other areas just in case.

Oh, and it's STILL raining. Kind of a gross day here - been storming/raining since early this morning.

Pretty good end to the day

Dad had a good end to the day. He had a strong voice, ate dinner nearly on his own, and even used his left hand to balance the chocolate frosty as he used his right hand for the spoon. Definite progress.

Dad was pretty tired by the time we left, and his hiccups were still really causing pain in his chest. They're trying antacids, thinking that maybe the higher dose of steroids is causing the issues. He had a decent appetite.

Thanks to Bill and Shirley for stopping up tonight - it was good to see you! No call from Mayo Clinic today, but expect it really at any time.

Not much else to report other than I dragged Mom and Grandma to Barrett's Bar and Grill for a Blarneystone sandwich and a Boulevard Wheat Beer. It was just as good tonight as it was 16 years ago.

Other than having to pull over quickly on Dodge Street to get the top of the convertible up during the flash rain storm (with NO warning - there were a few drops and then downpour), today went pretty well. The house is very clean, and so happy that someone else cleaned it. Let's hope that doesn't turn into a habit.

Not as strong as yesterday, but still hanging in there

Dad had a pretty good night. Not sure how much he slept (without the constant monitoring of ICU, it's hard to tell unless you're in the room with him). He's in the corner room by the ice machine which is great during the day for family members, but not so great at night when trying to sleep.

No word from the Mayo Clinic yet, but we did hear from Dad's oncologist this morning. He definitely wants to check into having Dad be part of the in-patient rehab there at the hospital once he's medically able to go. This allows his doctors to check in on him daily and monitor progress closely. Mom is talking to the social worker today to get everything lined up to ensure that the insurance would cover it. He also wants to talk to Neurosurgery and find out when they can start a low-dose blood thinner. With his high susceptibility to blood clots, they'd really like to have him on a therapeutic dose just as soon as he gets cleared from the neurosurgeons that the bleed is all healed up in his brain. His daily chest x-ray still shows no pneumonia or other issues with his lungs -- good news. Being in bed that long without a lot of activity tends to lead to pneumonia. Definitely not what we want.

There isn't a nurse's aide on the floor today, so we're making sure that someone is in the room at all times. Mom and Grandma just went up, and I'm hanging back while the house is cleaned (which is going to be awesome!). Everyone is pretty tired after the past week and a half, without much of a break in sight. Thankful we're not dealing with this from a hotel room, as there is something to be said about being "home" at the end of the day.

I plan on going up after the merry maids are done to see him, and then on to shop for a microwave at Nebraska Furniture Mart. Fixing the old one just doesn't seem like the right thing to do, especially when you can get a new one for the price of fixing the old one. Not sure Mom agrees yet, but we'll see.

Stronger, lots of visitors, and out of ICU

We all wrapped up the night with a "Nebraska" dinner, including perhaps the BEST corn on the cob we've tasted (bought at the farm stand on 204th street in Elkhorn by the Arby's parking lot).  Ever.  Filets from Rick's Meats in Elkhorn, corn on the cob, fruit salad of fresh cantaloupe, strawberries, and blueberries and a Villager apple pie for dessert.  It was fabulous, and we shared with all of the Huffs.  Good to have the house full of family and a good home-cooked meal.  Wish Dad could have been here for it - he would have loved it.

Amazing what a drug hanging from an IV pole can do for someone.  Dad was moved out of ICU tonight to the neurology floor (Room 505), and is so far doing well.  I just talked with his nurse, and she said that he was very tired, but doing pretty well.  We really don't want him on this high dose of steroids too long, but it's clearly the dose he needs so we weigh the risks with the benefits.

I guess earlier tonight when Mom and Grandma were up there, he actually had both arms behind his head (like if you were to lean back on a bed with both arms behind your head) -- this sounds minor to most, but major to us as Dad hasn't really used his left arm much in the past week and a half.

Thanks to the visitors for stopping up today -- both family and friends.  Now that Dad is starting to be a bit more alert, this really helps stimulate the brain for him with someone other than the immediate family.  

I expect to hear from the Mayo Clinic tomorrow at some point, with the scans confirmed to be delivered to the front desk early this afternoon.  

A little better today, likely due to increase in steroids

As Dad wraps up his first 24hrs on the highest dose of steroids, he seems to be slightly better. PT was in this morning to get him up to the chair, and they commented that he seemed a bit stronger, and he ate breakfast under his own power. Eyes are still closed most of the time, but is a bit more alert. He should (hopefully!) become a bit more alert and a bit stronger, allowing him to do more PT and start building back muscles he's lost. Really no strength at all to speak of, so he has a long road of recovery ahead.

Dad is on the list of patients to be moved out to the floor today (6 South), which is a good sign. Not sure if we'll hear from the Mayo Clinic this afternoon, but the scans should arrive at the front desk of our Neurologist around lunchtime.

Grandma is on her way back up to Omaha to stay for a few days - we always love to have her around. And the Merry Maids are coming tomorrow to do a deep clean of the entire house. We're hoping that clean baseboards and mopped floors will brighten things up around here and allow us to stop saying, "We really should clean the house today." Who says money can't buy happiness? I'm beyond thrilled someone else is cleaning the house. :)