Adjusting to life back in Omaha

The frequency of posts is likely to go down quite a bit now that things are a bit calmer and not as much to report. I think Dad is making Cox telecommunications wish they'd never offered him an unlimited calling plan, as he's burning up the minutes on the phone. He's still doing well, but the steroids (we think) are causing him to not sleep very soundly at night.

I'll get an email from him at 1AM, and then again at 5:30AM. . .so I know there's not much more than a series of naps going on back there. He still sounds good, though, but lack of a really good night of sleep is going to catch up with him. I've said it a lot, but when he's tired, everything is more difficult.

The calendar is pretty open for lunch dates, social visits, and phone calls. Just contact Dad directly there at the house or via email.

Life is returning to (and I'll borrow a term from my good friend Eric, here) the "new normal." Mom and Dad are both still pretty exhausted from the past couple of months, but something about being home in their own bed makes things just better. Stopping by for a quick visit with the grandkids and to see Tracy and Rich. . .I don't think any of us will ever take that quick pop-in for granted again after spending the time in Rochester, six hours away from familiar faces.

I'm off to Vancouver, BC, this weekend for the wedding of some good friends. It feels great to be getting on a plane again for fun, and not out of necessity. :)

Home

I look back over the last ten years or so since I've left Omaha, and there have been times I've been very anxious to get home to see everyone and spend time. That feeling I'm sure pales in comparison to the feeling Dad had last night and today as they drove back to Omaha after spending pretty much since May 3rd in Minnesota.

Short story: they're in Omaha and beyond thrilled to be there.

Longer story: so the MRI yesterday was pretty routine - in that they were getting a baseline of post-surgery. As expected, the pressure on the brain stem was greatly relieved. This has resulted in Dad keeping his eyes open nearly all of the time, steady when he walks, and going way beyond just the basics of living. He even helped Rich load the car this morning and unpack the car when they got to Omaha. It sounds simple, but he wasn't able to do those things in April and May - he was focused on just staying awake and doing the bare essentials. Amazing turn around.

The plan is to follow up at the Mayo Clinic in ten weeks. There is no further treatment of chemo at this time (because there is nothing to treat). They're going to watch him closely to ensure that all continues to go well. The MRI also showed great relief in the swelling of the brain - no longer crossing the mid-line because the brain was running out of room on the right. There is no question that the surgery saved his life, and to say he probably had weeks to live had he elected not to do the surgery is not a stretch at all.

I guess the grandkids were all super excited to see Grandma and Grandpa after such a long time, and I know that Mom and Dad were incredibly happy to see them as well. The hope is that things can get back to "normal" a bit for the summer. Dad will still have some speech therapy to do (2-4 times per week) to continue to work on some cognitive rehab, but that will be done in Omaha.

When I talked with them both today, they were both tired, but happy to be home. Dad said that leaving Rochester today was the happiest he's been to be on the road home since he left Vietnam back in 1967. After getting a few days in of some good rest in his own bed, the calendar will open up for visits, lunches out, dinners out, and spending time with the family and friends. It's unbelievable to think that he can now turn his focus to watching tee-ball games, getting little Kaitlyn to smile, telling Emily how much her eyes sparkle like a princess, and helping Sam steer clear of neighborhood traffic on his bike.

Everyone is home where they should be. Finally!

And he's out!

Not much to report, as I haven't actually been able to talk to anyone up in Minnesota outside of a few SMS text messages, but Dad did officially get out of the hospital today in time for his MRI. He completed that, and Mom and Dad are hanging around the Gonda Building where their 3:30PM appointment with the neurologist to review the results of the MRI is taking place.

Dad apparently didn't sleep well last night, but is INCREDIBLY anxious to get back to Omaha. Rich is driving up to Rochester to be there to help load the car and drive back to Omaha tomorrow morning. As always, when Dad's tired, things are a bit more difficult (following directions to complete a process, for example), but he's thrilled that he's out of the hospital and nearly home.

That's literally all I know. One would think that I could have gotten through to them on the cell phone today, but I'm sure Dad was lighting up the switchboards with his calls out that he didn't click over. As I learn more, I'll post it.

On target for getting discharged tomorrow AM - staples are OUT!

Talked to Mom this morning as Dad was just coming back from his morning PT session. They have Dad on track for getting out of the hospital quite early tomorrow (around 7:30AM) in order for him to make his 9AM appointment for an MRI down the street. Could be a hectic morning, but one that we've all been waiting for.

Dad woke up in his new room (better late than never) - more comfortable bed, an AC/heating unit that works well, and had another solid night of sleep without any eye pain. He sounds really good on the phone, and just got his staples out. Mom isn't sure who is more happy - Dad or the staff.

The neurosurgeon apparently was beside himself this morning, and couldn't get over how good Dad looked. That's a nice confidence boost for Dad to have someone that saw him a lot over the last month to say that. . .

So tomorrow - MRI and mtg with the neurologist. Then drive home Friday morning. That's the plan!

"Best I've felt in 5 years" -- Dad

Not much to report, other than Dad continues to feel really well - the best he's felt in five years according to him yesterday. He continues to get stronger by the day, and his "field trips" out to the gardens, to a park, and walks around the hospital continue. His endurance is increasing, as well as his strength and balance.

Yesterday they took Dad out to a park that had a various surfaces (bark chips, cement, grass, sand, bridges, sidewalks, gravel roads, etc.). He did just fine on all of them, and no concerns at all. It was a new place, and they "tested" him on finding his way back to the spot where they were a while ago, and he did just fine.

The best part of yesterday was that for the first time in a long time, he didn't have the pain in his right eye. He didn't know if it was the right combo of tylenol and ice packs, but it left him in the middle of the night and hasn't come back yet. This seems to be the biggest boon to his feeling better - so we all hope it continues (not sure if it's the ice, that the swelling has gone down on a particular vessel relieving pressure, or. . .?). Good riddance to the eye pain.

Staples get out tomorrow, and Dad is getting more and more excited to get home. As I'm sure Mom is too. I think Mom is going to get "Marriott Customer of the Year" for her extended stay, helping Marriott's bottom line for Q2. :)

MRI is Thursday, with the appointment directly following with the neurologist to talk about what's next. All signs point to Dad being home for Father's Day!

Routine continues in rehab

Not much to report out of Minnesota, which is a good thing. Dad has kept very busy with the PT, OT, and speech therapy the past two days. Physically, Dad is doing very well. Still not quite where they want him cognitively, however. They're a little concerned about just how well he looks, that if he were to wander off, he wouldn't raise any attention from the staff. To help mitigate such a circumstance, they've taken a few measures and are working with him a lot with finding his way "back" to where he started.

He's had his picture taken (recent picture for the security folks to be able to quickly track him down), had a wrist alarm that would go off if he left the floor (since removed as apparently they don't work all that well), and are working with him a few times a day in taking him to a new place, and then having Dad find his way back to his room. Looking for landmarks, familiar sites, etc. Not exactly reassuring for Mom who will be trying to keep tabs on him at home, but we're really glad that the medical staff is working so diligently with him on this. Dad says he won't wander off without telling anyone, but we're not entirely convinced that he understands why we're concerned.

Other than that, they're working with him on learning how to work on reading some more. His eyes tend to jump around a bit, merging words/paragraphs together. They say that will improve over time. He's doing exceptionally well with all that they are asking of him - often going over the requested amount of reps or exercises in his appointments.

Dad is going to have his follow up MRI and appointment with the neurologist on Thursday, and hopefully home on Friday. He will get his staples out on Wednesday, three full weeks after surgery. He seems to be sleeping a bit better, and is really starting to realize just how lucky he is to be walking, talking, and laughing. I can't wait for him to get home and tell you all over lunch, dinner, or tea about his experience the past month.

I can't wait for him to get home. Mom, too.

Still doing well in rehab; patterns continue for sleeping

Just talked with Dad, and I realized that I hadn't updated the blog yesterday. Bit of a long day for me getting back to Oregon, work, going through five weeks of mail, and adjusting to just being home. Of course there were a few pints of local oregon microbrews to welcome me home with some friends, so that was a nice way to end the first day back at the office in a while.

Dad has officially returned his wheelchair, and is now walking EVERYWHERE. He even took the nurse down to the chapel at the hospital yesterday. That's no small feat. It's about a 10 minute walk down there - one way. After a day of rehab where he's been doing a lot of physical activity, one would think Dad would have been tired last night. No sleep, however. Or very little. Mom is going to ask the neurologist tomorrow about possibly rearranging the dosing times for the steroids, as that can cause insomnia if taken too late in the evening.

Despite the big hopes of getting staples out this week, it looks like next Wednesday is the day to have them removed. He's still also having quite a bit of right eye pain, which again seems to be referred pain from pressure elsewhere in the brain. Hopefully as the swelling continues to decrease, that pain will go away. He's also having quite a bit of trouble reading right now (paragraphs tend to jump around on him and it's hard to stay focused on the words), but they say that should go away with further rehab, and are actively working on it.

In talking with Dad just now, he said that said he hasn't felt this good for "over a year." He's apparently walking around talking to the staff about how he's "the miracle kid here." Despite not having a good night of sleep, he sounds really strong and had a good, full day of rehab. They were just opening up a care package from Tracy and Rich and the kids when I called. They were digging in to pictures, cards from the kids, cookies and rice krispie treats. He received another care package yesterday, so he's well-stocked for treats. :)

On track for getting out next Thursday. Unsure yet if he'll be back to Omaha before the weekend as they may take the next MRI and see the neurologist while they're up there, but regardless, Mom and Dad are both ready to get back to Omaha and get settled back in.

As strong as I've heard Dad sound in months

I just talked to Dad as I walked around the Denver Airport. He sounded stronger on the phone than I've heard him in MONTHS. And this is after a really packed day of rehab. The big news of the day is that the wheelchair has been removed from his room -- for good. Dad is now walking to all of his appointments, and even got permission to start walking outside (with an escort). He's doing really well, and is even MORE ready to get back to Omaha to see everyone.

The next week and a half is going to be hard on everyone - as he continues to get stronger, his will to get back to Omaha is going to get stronger and stronger. Good luck, Mayo Clinic. :)

Hopefully some better sleep is in store for him tonight, and those staples really can't come out soon enough. The doctors are due to come in tomorrow to evaluate and plan next steps.

It's our hope that Dad is home for Father's Day - or as this year most assuredly will be called, Grandfather's Day.

Pattern of one good day, then one down day, continues

Dad had a good day yesterday overall. They kept him very busy with rehab the entire day, and really only about a 10 minute nap over lunch so he was extra tired when it was time to call it a day. Yesterday they did decrease his steroids from 24mg down to 16mg, so there may be some impacts from that over the next several days (but hopefully not).

There are conflicting reports this morning on just how well Dad slept. The nurses reported he slept pretty much the entire night, but Dad said that he didn't really sleep well at all. Lots of things bothering him - staples, headaches, and the thought of the necrosis continuing to progress. The thought of necrosis pretty much is hard to grasp when you're at 100%, let alone when you're not quite on top of your game. Dad's mind tends to run a bit to the extremes around what is going on right now, and having him listen to the doctors and the medical staff doesn't quite cut it. We continue to tell him that he had the surgery to allow for more swelling from necrosis, and that it saved his life. He kind of gets that - but then immediately falls back to the thought that he might need the "flapper" (as he calls it) - taking out a bone flap from his skull to allow for more swelling. That is NOT an option now, as the steroids worked and got him over that initial hump. At this point, no more surgery is in the works.

Hopefully a full day of rehab (and I mean FULL) will keep him occupied and focused on getting stronger and continue to repair those synapses and neurons damaged with the surgery and the swelling. He's doing really, really well. Being homesick and having too much time to think about "what if's" are his biggest issues right now. We'll take those - as he will hopefully be home in less than two weeks.

I'm off to Portland in a few hours -- anxious to get home myself.

Quick update - tentatively out of rehab June 18th

Got the news that the target date for getting out of rehab is June 18th.  They think he has done well in this short time.  More later tonight after I talk with Mom.

I can confirm he's figured out the calling card

Watch out, everyone. Dad knows how to use the calling card from his room now, which means you could be the next person to get that 6AM phone call. :)

While I wasn't quite ready to be up, it was good to hear that he had a solid night of sleep, and that was once again positive about his progress. He is definitely getting homesick, though, so I anticipate that number of phone calls he makes will go up this week.

I haven't seen his schedule for today, but I know it was supposed to be pretty busy. Between speech therapy (working on his memory and cognitive functions - didn't realize this was "speech" therapy, but it is), OT, PT, seeing the doctors, more OT, more PT. . .he's going to have a very packed day. Hopefully he gets in a nap after he stops back to his room to eat lunch, as he's going to be wiped out from that long of a day. I anticipate that will pretty much be his schedule the rest of this week, with the exception of hopefully getting his staples out about mid-week.

Rules from kindergarten apply: when you're tired, take a nap

After such a positive day, it was tough to hear this morning that Dad didn't sleep well at all last night, putting him in a bad spot this morning.  As we've mentioned ad nauseum on the blog and on the phone, when Dad's tired, everything goes downhill.  Not a lot connects for him when he's exhausted (especially from no sleep AND physical therapy).  It was hard to say goodbye this morning to him after such a positive day yesterday, but I pressed on.

I'm now writing this with second-hand knowledge of the rest of the day.  And the blog will continue, just probably not with the level of detail that I had before when I was living/breathing Saint Marys Hospital.  I did get a report later today from Mom that after a nap, Dad seemed once again like a new man.  Therapies went better in the afternoon sessions, and the therapists apparently even bragging a bit on Dad's progress.  He's at "the top of the class" for the forward progress he's made so far, and for his attitude (early morning discussions with Mom and I excluded).  

He's really doing well, but starting to really want to be home in Omaha.  I think getting the staples out (for the record, there are 40 total, not 72 like he's been saying) in a few days will really help his spirits, and continuing to do well in his rehab will also do some good.  He got some beautiful flowers from a few of his friends at the Rocky group (Thanks Elaine, Ralph, and Diane!), that brightened up his room and he wants to say a huge thanks for all of the phone calls he's been able to make (and receive), emails, and cards.

I'm back to Portland on Tuesday as planned (well, re-planned a few times, I guess).  I can relate with Dad a bit on wanting to be in my own house, my own bed, and around familiar things.  It was a fairly quick journey back to Omaha today with just me (goosing the speed limit a bit and no stops makes it a fast trip).  And the reception I received at the Huff house with screaming children all running to Auntie Mary. . .well, that took the sting out of leaving Mom and Dad in Minnesota just a little.  I can't wait for them to get an even bigger reception in a few weeks (or less!).

What a difference a day makes

Dad just wrapped up a webcam chat with three of the four grandkids, and I think both sides of the camera were thrilled to see the other side. The picture to the left represents a very fast capture of constantly moving kids and literally a scream of "HI GRANDPA!"

Mom and I had to do a double-take upon arriving at the hospital. Dad was in with PT in the gym, and they were just having him stand up out of the chair to do some more balance exercises.

He is walking better now than the week before surgery! Seriously - we couldn't believe our eyes.

They're really working with him on his balance (he's walking a foam balance beam, which Dad claims he couldn't have done even in his high school years), field of vision (asking him to walk in the halls, finding things related to fire: extinguisher, smoke alarms, fire alarm, etc.), bouncing a big exercise ball, doing the grapevine (left to right is good, right to left isn't so hot yet, but he's getting there), and other exercises/activities.

The PT thought he was doing really well. And I cannot tell you how much more rested and more positive about how things are going. He celebrated the end of a good day with a root beer float, courtesy of the staff up here doing a social hour. He's also starting to realize what the pathology report meant. He doesn't really remember us talking to him when we got the results back, and doesn't really remember talking to the Neurologist on Thursday, but it's starting to sink in. At least a little.

Seeing him like this makes it both easier and harder to leave tomorrow. Seeing him improve with such leaps and bounds after even just a day is awesome, and I'm sorry I won't be around here the next week or so to continue to see him improve. But I'm leaving him in VERY capable hands with Mom.

End of the day - everybody's tired

Dad had a pretty frustrating and exhausting day, but he sounded better when I talked to him about an hour ago. He was calling to get the address of this blog, so his nurse could read it in her spare time tonight. His day started at 7:15AM with Occupational Therapy (OT) coming in to help him get dressed, brush teeth, start breakfast and start the day. He then had a bit of a break, and then pretty much went from 10AM until 3:30PM with just a break for lunch. There was speech therapy, OT again, physical therapy (PT) x 2, and meeting up with a recreation therapist to find out what he likes to do and they'll start working on it.

This recreational therapist was pretty interesting - his job is to get Dad back oriented and able to get out into "the real world" and not the protected bubble of the rehab hospital. He's been doing this for 32 years, and clearly loves his job. He was talking about how he takes the patient out across the street and takes them to the grocery store, coffee shops, bank ATMs -- things "normal" people do, to make sure they can return and function once they leave. This rehab goes way beyond just the physical, which is so important.

The trip to the West side of the hospital (as the sun was going down) was well-received. Warm sun on the face felt good to Dad, and we were out there about 40 minutes. We then went inside to let him have his dinner (which keeps causing heartburn - the steroids he's on can do that as well), and he was heading for a nap when we left. The best part for Mom and I was to see Dad get out of bed, pretty much on his own. Two days ago he had to have two people help him. Today, he basically did it alone with some monitoring. He's getting stronger by the day, and his balance is getting better as well. Great to see!

Tomorrow's schedule is quite a bit lighter. He sees OT at 9:15PM, and then a few doses of PT scattered in through the day. Likely the same for Sunday. Some well-deserved rest after hitting it pretty hard the first few days. Mom passed the "I can do this" test (since I'll be leaving up here Sunday) today. I made her take the keys and drive down to the clinic, park the car, and we talked with the Mayo Clinic staff about where she asks for help when getting off the elevator (the walk to the MRI is about three blocks or more by the time you wind your way around the buildings). I think it made me feel better, and I know it helped Mom to have a dry-run.

Posts in the coming weeks may be a bit shorter (since I'll be relaying information instead of actually seeing it in person), but I'll keep up as much as possible. Have a good weekend!

Family Picture and quick report from the day

Front, left to right: Emily, Dad, Jan, Dillon
Back left to right: Tracy, Sam, Rich, Mary

(Missing: Kaitlyn, who today is 4wks old)

Dad had a pretty good day - full of rehab, which means he's pretty tired and even a little grouchy. He's beyond frustrated that things that were so easy before the past month are now really hard to do. He's realizing just what deficits he has (because they're testing him for them), and that's pretty frustrating for him.

I'm going to take him outside before the cold front comes in and brings rain in this weekend.

Picture is worth a thousand words

Hard to believe that just a few days ago he was nearly unresponsive. This is a picture of him walking the hallway with the help of just ONE person (with a really good grip):

And this is a haircut he got in the room today. He felt so much better after getting cleaned up. A new haircut to head on downstairs to rehab just a few hours later:

"Hello, Rehab"

Over the course of the past few hours, we've met no fewer than 12 people that will be tightly woven into Dad's days of rehab. Physicians, occupational therapist, physical therapists, speech therapist, pharmacist, care techs, nurses, recreational therapist, and social worker. They're all going to keep Dad quite busy each day, with the goal of going home as soon as possible.

Mom and I got the tour of the floor, learning where the laundry facilities are, seeing all of the different rehab areas, the "kitchen" (toast, pudding, juice, water, ice), computer room, and the outside area. The unit is split into two areas - brain injury/stroke, and spinal injuries. There are 40 beds in this unit. Even more impressive is that there are 40 physicians that work in this area. All very specialized, and the agenda for the next few weeks will be tailored for Dad's needs as both we see them, as well as what they determine he needs.

Overall, Dad is doing very well; and while really tired now, he's tired because he's been so active today and not because he's too fatigued from surgery. A big day today with haircut/shave, shower, moving, PT X 2, OT x 2, neuro eval, neurosurgery eval, and evaluations by two doctors once in rehab. I'm tired, and all I did was watch.

Kind of a bittersweet afternoon, though. Dad was oriented enough to finally get the news about his friend from Utah passing away earlier in the week. As expected, it hit him incredibly hard. He hopes to talk to the family yet tonight.

Dad should be up here for a little while (a week or two), so if anyone has been looking to send a card or words of encouragement, you can send him an email or a card. The address up here:

Roger Dillon
Patient Care Unit - Mary Brigh 3F
Room 3-632B
Saint Marys Hospital
1216 Second Street SW
Rochester, MN 55902

There were a bunch of cards that Tracy just mailed up here today (the mail had been stopped), so he'll get those either Saturday or Monday.

"I think he's turned the corner" (as said by Dad's neurosurgeon)

Positive news out of the hospital today. Dad's medical team is very pleased with how he's doing. He's getting stronger by the hour, it seems. Just as soon as a bed opens up down in rehab, he's on his way down there for 10-14 days (or shorter/longer, depending on how he does).

He's all cleaned up after getting a haircut and a pretty good shave (not great) from the traveling barber. He's even in some running pants and a t-shirt instead of a hospital gown. That makes as much of a difference as anything, seeing him in normal street clothes.

Swelling continues to be there (and may actually still increase with ongoing necrosis - no way to know when it might peak and then start tapering off), so they are keeping him on the high dose of steroids for a while. They "may" get him down to 18 or 12mg by the time he leaves rehab, but they want to be really careful in doing that.

He's had PT in already to work with him, and he actually walked down the hall! Still with some help, but it was with one person, not two, and pretty much under his own power. He likes to lean to the left quite a bit still, so they rehab folks have their work cut out for them in getting him to keep his eyes open and compensate/right himself using his right side.

I actually escaped back to the hotel to work for a while (still no connection at the hospital for some reason), so i thought I'd update the blog while I had access. A busy day ahead as he moves into his new room on the third floor, gets oriented to the new staff/new surroundings, and gears up for at least three hours of rehab that starts tomorrow.

It's hard to blog without internet access - but a good day for Dad

Sorry for the lack of updates today - I couldn't get my laptop connected to the hospital network for some reason. Let's hope that doesn't happen again tomorrow.

So - to get you up to speed, Dad had a pretty good day. He's improving by the hour, it seems. A rundown of the day:

• Still irritable, but we're blaming the steroids and the last week his poor body had to endure. Apparently high doses of steroids can cause instant irritability. We can confirm this side effect. He seems to have ever so slightly lightened up a little bit in his ability to joke around.
• He was up in the chair for breakfast, back to bed, up for physical therapy (PT) and endured some occupational therapy (OT) as well. He then got up in the chair for lunch at noon, and stayed up and mostly awake/alert until just after 4PM. Eyes were open more, he was more conversational, and definitely had high marks for his improved eating skills. Much more sure of himself as he takes that spoon full of ice cream in for the final approach. This high dose of steroids is really working. The neurologist called me this evening to check in, and he said that Dad would likely be on the high dose for several weeks. It's pretty obvious that he needs them right now, and they need to be very careful weaning him off them, so it will be a slow process.
• Mom and I took him outside to the hospital garden area (just off the main elevators - a quick trip back to the floor if needed) for about 45 minutes, where he took in his first fresh air and sunshine since a week ago. The fact that he was on the phone while he was out there completed the trifecta: fresh air, sunshine, and cell phone. Upon going upstairs, he was beyond happy to talk to his favorite Radiation Oncology nurse (Judy), who continues to pump up his spirits from 350 miles away. He then nestled in for a good nap for about 90 minutes before supper.
• Once he got up from his nap, he was even a little better. He had a very good dinner, but he was expecting breakfast. His sense of time is all messed up. He can't quite figure out that Nebraska and Minnesota are on the same time zone. At one point (we'd been talking about this for some time that it was 7PM, not 7AM) he asked, "So is Omaha 17hrs time difference from here?" I said, "No, Dad. That would be China." I think we did figure out one small reason why he thought things were a bit off - his watch said 6:15PM when it was actually 7:15PM. Not sure if we missed a time change back in April or if he was messing with his watch. Regardless, we got it fixed.
• Tomorrow is the day he's been waiting for: The Barber. Saint Marys Hospital has their own barber service in the building, and they actually made an appointment to come up to Dad's room and they will do a close shave and a haircut. He is looking a bit rough around the edges with this new 5-day growth, but he wouldn't let me even TRY to shave him today, so I'll leave it up to the barber in the morning.
• The biggest news of the day was that he has been cleared to go to rehab tomorrow. That was a big issue of "what if he doesn't qualify?" The next few weeks are finally a bit clearer, and they will move him down to the third floor rehab center to work with specialists in this particular area for at least three hours a day (if not more - whatever the patient will tolerate). This really is great news, as the sooner you get patients started on rehab, the greater the chance is they will recover what has been lost. Dad's still very unstable on his feet (but getting stronger and able to stand for longer durations with not as much help). Walking still requires an escort on either side, but he's getting better

Tomorrow is an early day for us all. We need to be at the hospital just after 7AM to meet up with his neurologist, the neurosurgeons, and get him prepped and ready for the move downstairs. We'll take the positive progress any day. Getting to rehab is a major milestone for him to reach, and we're thankful that he was able to continue on his care here at the Mayo Clinic. Have I mentioned lately how much we can't believe the level and pace of care here? I still can't get over that he had been evaluated by two different teams (Neurosurgery and Neurology), had a CT scan and an EEG, labs drawn and results back, and we had talked to ALL of his doctors with all of the final results by 2:30PM that afternoon.

Bed alarms are still active (Dad agrees he's pretty good at getting those to go off), and we're already looking ahead when we get back to Omaha to get some kind of audible alarm or alert when the doors are opened.

With that - calling it a night here in our new (and quite comfortable) hotel room. Hopefully the technical difficulties are resolved tomorrow and I'm able to post from the hospital. Overall, a few more smiles today from Dad, which was really great to see.

Good night!

Update via iPhone: Dad is most likely heading to rehab tomorrow

Fairly quiet morning, Dad's now sleeping

Mom and I are in the process of moving from the 2BR to a 1BR hotel room (so long comfortable bed, hello comfortable air mattress!), so we haven't been up to the hospital yet. We both slept in just a little this morning (ahhhhhh), and having a bit of a slower-paced day.

We've nearly needed an abacus to work out the improved rates, retro-rates, tax-free status (at 31 days, you get all of your room rate taxes refunded), but we've done it. I cannot say enough about Towneplace Suites. They've been really, really nice to work with and very accommodating.

Dad is sleeping now. He was up to the chair this morning for breakfast (so we hear from his nurse Sara). Not sure what the doctors said this morning, but yesterday afternoon we did talk with them so a little less guilt felt about not being there this morning for rounds.

Just as soon as we can get into the new room (anytime now), we're moving and then up to the hospital we go. Things are apparently pretty much the same from yesterday. Dad was pretty confused this morning on where he was, and was getting pretty adamant about talking to the person in charge to get him out of there. Thankfully, they're not giving in.

Steroids kicking in? Up in the chair shaving

We just don't know what to think. Dad is up in the chair, shaving himself, after having a shower (while sitting in the shower chair). He's much more conversational, a little bit of a sharp tongue, and have even seen him smile a few times. Too bad he couldn't act this way when the surgeon's are up in the morning for rounds.

Everyone on the floor is happy to see him shaving himself and talking, eyes open (mostly), a little stronger in his grip in both hands today, and pretty good hand/eye coordination around the whole shaving experience. I, of course, think he's rallying just a bit so that I didn't have to shave him.

Dad may end up with a mustache and a goatee the way he is going, but he's looking/acting a bit better. Of course the doctors aren't around to see all of this, but I'm snapping a few pictures to show them. They tend to come up when he's super tired and almost non-responsive.

The rehab doctor came up this morning and thought Dad looked much better than yesterday. They'll continue to follow him and work with the surgery team to determine when Dad is ready for rehab. Rehab consists of three hours a day (six 30-minute sessions, or three hour-long sessions), and yesterday there was no way he'd qualify. Thanks to the steroids, he's getting quite a bit stronger.

Dad wanted me to be sure to share with all of you how not fun the EEG was. He's ready to file a brutality claim with the hospital, but we're reassuring him that it really wasn't that bad and that it's normal. The rehab doctor actually served as a "control patient" when he first started to help calibrate the machines. He said it wasn't a lot of fun, but they needed a good connection for the EEG wires to get good readings.

No ride outside today - he can't yet leave the floor. But they're going to check to see if maybe tomorrow he could go outside for some fresh air.

I need to convince him now that calling a barbershop is not in his immediate future. One of the male techs is going to come in and help Dad finish up shaving. If we can just keep Dad from wanting to get out of his chair to get to the phone, that will be a victory.

Some concern from the surgeon this morning

Dad is up and eating breakfast this morning in bed (not quite the breakfast in bed we all dream about), seemingly eating a bit better than yesterday. He's pretty stiff and sore from all of the hiccups, staying in bed the past week, and not a lot of activity.

His neurosurgeon was in this morning, and when asked at what point does he get concerned about how Dad's doing, and he said, "I am concerned." The surgery was very successful in removing the swelling and pressure on the brain stem, but there is significant swelling in the parietal and frontal lobes of Dad's brain. This is in part caused by the surgery itself and the brain is revolting a bit, but also with possible additional necrosis from the radiation. Surgically, he can't go back in and remove any more safely. So they are very aggressively treating this swelling with a high dose of steroids and will watch him over the next couple of days to determine if there is any improvement.

If not, then what they would need to do is to go in and remove a bone flap and let the brain breathe. Basically create a window in the skull to allow the brain room to swell. They apparently sew the scalp back over the opening, and some people go home with a helmet, others go home with nothing. It would be like that for a couple of months (or so), and once the swelling was down, they would go back in and replace the bone flap and stitch him back up.

This makes it really hard to plan and determine next steps. We may be talking with some family members to see if anyone is looking to get a few days in luxurious Rochester to allow Mom a few days back in Omaha to tend to a few things in the next week or two. We will be in touch. :)

We will see our neurologist yet today. Not sure what time he will stop by, but anxious to talk with him as well since surgical options seem to be pretty limited to help with the swelling. More later today.

A few pictures from the Peace Garden

A few pictures from the Saint Francis Peace Garden (where Mom and I hung out for a while today). The first picture is from the entrance to the garden just outside the main hospital entrance:

This one is as you get into the garden near the back statue. Pergola-like setting with nice benches and protection from the wind and the street noise:

The final picture from the back part of the garden, where the ivy and the statue come together. One of my new favorite spots in Rochester.

Final Post of the Day: High dose steroids working a little

Mom and I spent the better part of the afternoon outside. She chatted with a few folks while I did some work and talked to the team back on the West Coast. She rolled in the scooter and I walked around pretty much half of the Saint Mary's campus, stopping to see the Peace Garden (again, quite peaceful), and taking the back way into the hospital. Felt good to get out and walk in the fresh air.

Dad was a bit more alert this afternoon (probably thanks to the monster dose of steroids he is now on), but still not great. You can tell he's far from normal when he didn't ask for the cell phone ONCE all day. That's as much of a symptom as anything. He just wasn't up to it, or didn't think about it, or both. Definite red flag for us when he doesn't ask for the cell phone at least once every 15 minutes.

We chatted with the neurology team that evaluated him several times today, and they said that the EEG done this morning did not indicate seizures that we witnessed were still going on. However, they do think it was seizures he was having caused by the increased swelling in his brain from the surgery. No changes to his medications as he's already on two seizure medications and his levels were okay. There weren't any more seizures today, so maybe the combination of the steroids and the swelling going down post-op helped out there.

So many things factor in to why he was the way he was today: interrupted sleep patterns, new medications (pain meds, anesthesia), swelling from surgery, swelling from the radiation necrosis. . .so while several things were changed/monitored today, it's hard to say what one thing woke him up a bit and made him a bit more responsive (and grouchy).

I did laugh this afternoon, probably inappropriately, at something Dad said. Mom and I were trying to straighten him out a bit - he often leans too far to the left and then doesn't have the strength to straighten up on his own. Well, being hypersensitive to pain right now, when I tried to tuck a pillow under his left side to prop him up a bit, he said, "Somebody's getting fired today." I told him right back, "I don't work here. You can't fire me," and continued to push the pillow under him.

Mom and I are in for the night. Both of us are pretty tired, and have another big day tomorrow (or at least morning). I'm back to trying to work a bit more consistently this week. Of course today wasn't as successful as I'd planned last night, but getting back into the groove on a few of my projects really is a nice distraction.

More tomorrow morning after rounds.

A little better this afternoon

Dad's back from the EEG, but no results just yet. Anticipate those this afternoon, however, and a follow-up with the neurology staff once those are in. The CT results are in, and there is no bleeding but some increased swelling. They're increasing his steroids (from 12mg/day to 24mg/day) to try and combat the increase in swelling.

He seems a wee bit better, actually complaining about the "shock therapy" he received courtesy of the EEG techs. I'm pretty sure that it was a fairly painless procedure, but with Dad being so hypersensitive to pain and stimulation right now, it may have felt like it.

More equipment keeps entering the room for rehab. He's going to be working later today assuming they can get him a bit more awake and alert. Our neurosurgeon from last summer (who did the original biopsy) happened to step off the elevator as we were talking with the social worker. After a quick reminder, he remembered us and even stopped in to say hello to Dad. Dad was happy to see him.

Also talked more with the rehab doctor and the social worker, and they're both highly recommending that Dad stay at Mayo for his in-patient rehab. Based on his limited history up here, things can change pretty rapidly, and he's only three minutes from neuro-ICU and his surgeon/neurologist that have been following him very closely the past month.

Mom and I are looking into some additional housing options for a bit longer term with the help of the social worker, as the hotel is getting pretty expensive, let alone for another 3-4 weeks. I'll be bargaining with Towneplace Suites tonight to see what they can do about the rate (those that know me, know that I love to bargain - be it at a local market in Portland or in the Grand Bazaar in Istanbul). Not giving up yet on the hotel, but good to start seeking out options.

I'm also trying to decide when I can head back to Portland for a bit. Coordinating leaving with Dad in Omaha was going to be a lot easier than coordinating leaving from Rochester. I'm convinced that any future project Intel throws my way will pale in comparison to constantly changing requirements here with Dad's "project."

So, to wrap it up, Dad's a little better, but still not quite out of the woods yet on this latest bucket of curveballs thrown his way.

Labs normal, CT done, and neurology on the way

Labs came back normal, and the CT has been done (but no results yet). Neurology came by quickly to ensure that there wasn't an emergent situation of a constant seizure (there's not), and they will be up after rounds to do more evaluation and order an EEG.

Dad is somewhat responding to requests to do things, but really not happy or energetic about doing anything. Even eating has been put off for now, other than the liquid Ensure breakfast (exactly what I had this morning - don't knock it until you try it! Breakfast in 30 seconds!) that is on the way.

Roller coaster continues.

Monday morning - not as good as yesterday

Dad appears to have taken a few steps back in the past 12 hours. Our neurosurgeon was back on this morning after the weekend (good to see someone familiar with Dad's past month come in and have something to compare against). He showed some concern with how lethargic Dad is. He expected him to be at least more alert and around, and Dad just really isn't at all.

He seems a bit worse this morning. Extremely sleepy, and a new left leg twitch that they're thinking maybe are seizures. They're doing a few things this morning for some further evaluation:

• Discontinuing the narcotic pain meds again. Last dose was this morning at 6AM. Back to tylenol, although they say the pain should be subsiding quite a bit so that shouldn't be an issue. With his sensitivity to medication, that could be playing a role here.
• They're going to work on a plan to try and normalize his sleep/wake cycle a bit. He's not getting a lot of extended sleep, which before surgery caused some pretty tired times, so that could be factoring in.
• They've drawn some labs to see if there's anything like low sodium, low dilantin levels, or something else in the blood causing extreme fatigue/lethargy
• They are asking for a neurology consult to come in and evaluate for seizures, which if he's having seizures, that could cause him to be really tired as well. A lot could be causing seizures - new medications after surgery, the surgery itself, a couple missed doses of seizure medication, change in sleep/wake cycle building up over the past five days. . .a lot can cause them according to the neurosurgeon. So we'll see a neurologist today (not our normal one, but he'll be back tomorrow) to evaluate to see if it's seizures causing Dad to be so sleepy.
• And they're getting a head CT to make sure that there isn't something going on with his brain from the surgery. He's not exhibiting the normal signs that indicate he is having too much swelling or a bleed from surgery, but they want to make sure.

Looks like another long day here. I'd say our chances of departure tomorrow back to Omaha went from 50/50 down to zero.