Rhythm Being Estabished

Things seem to be settling into some sort of rhythm and Meagan is improving steadily. Her speech is back to normal. Last night she ventured onto the computer to finish a movie. She then went to her email and with a little help from Casey and me was able to start deleting junk mail. Took a bit of repetition and reminder but she did it. She is moving around the house confidently and handling her own dressing and self-care. She walked around the block again yesterday and did some yoga with the occupational therapist.

"How's it Going?"

An innocuous enough question. In our culture used in same way you'd say hello, or the Italians would say "va bene" or the French "Ca va?". I remember the old joke about how the French could have a conversation with two words that went like this:
Person One: Ca va? (how's it going)
Person Two: Ca va. (it's going alright)
Person Two: Ca va? (how's it going for you?)
Person One: Ca va. (it's going alright)

Only the tone and inflection vary.

But I digress...even though I know it's just a way of saying hello, I do have to say it's kind hard to say, "fine thanks, and you?". Because it's not going fine. It's not going well at all. I have a wife with metastatic melanoma who also just suffered a massive stroke and brain injury. I need to invent a new phrase to respond that's more appropriate to the situation. Maybe I should just slip into a little of my language skills and answer, "Come si, comme ca". It's closer to reality, most people get the ambiguity, and I don't have to give them the whole sob story.

Corn Flakes

The body and brain and are mysteries. I feel like a detective, trying to assess Meagan's physical and mental condition and adjust each day to suit her capacities and inclinations. Yesterday (Wednesday the 27th) was a pretty good day for her. By the end of the day I thought the right balance had been struck between rest, rehab, and relationships. She was able to get some stimulation and work parts of her body and yet also enjoy some times with family and friends. And funny enough, her body continues to crave and demand certain things as it attempts to resume control over her sodium levels. So Ritz crackers remain high on the list - munching quite happily 3-5 with each "feeding" as I term it of her pills.

Rehab Day One

How can you not love a woman, whose final words falling back into bed after being awakened at 6:00am to swallow 3 sodium pills washed down by 2 Ritz crackers and milk were, "life is good". 

Notwithstanding the frustrations and exhaustion that came from rehab sessions yesterday, she remains upbeat and positive. Those sessions drain her. Seeing people gives her energy. I can do the math. We will be adjusting her rehab sessions so she gets rest and/or naps in between. She's also ready to see more people. Her language skills are back to where they were before. She is moving around the house confidently and handling her own care. She still needs me to tell her schedules and such, the numbers part of things and organization part of things aren't there, although she doesn't much care. The keyboard is still a huge challenge, so that won't be a part of her life for some time. She is quickly adapting to her visual field issues, and is unconcerned about her inability to drive.

She dropped at least 8 pounds in the hospital - we've got her back up about 3 - but 5 to go to get back to her usual weight and we need another 5 on her to get her ready for future treatments. So abhorrent as it is for those of us who read The Omnivores Dilemma and Fast Food Nation, yesterday she had a Big Mac and fries. Plus an Odwalla protein shake I laced with a large scoop of Haagenn Dazs vanilla ice cream. Casey is all over her about how to ingest the right kind of foods to bulk her up, even though he and I are on more heart healthy food programs.

She also thanks everyone for the cards - it's a great way for her to practice reading.

Day One of Rehab - a summary

One of the things I learned quickly today is that it is very easy to overtax Meagan. Especially when she is being asked to rewire neurons and learn new pathways to doing old activities. It was frustrating for her and just too much to have too many rehab people. That said, it really wasn't too much for a non-impaired person. But when you've received an insult to the brain, what you or I might think of as easy or normal is not.

We had the lead person come in from Rehab Without Walls, and he had to go through all the obligatory legalese and procedures and process stuff. All Meagan had to do was listen, but even that is challenging. So when he left after an hour and the occupational therapist showed up she was already tired. She got more frustrated when she was asked to do things like type a sentence on a keyboard. That hour ended rather badly, so pity the poor physical therapist up next - she only lasted 1/2 an hour and figured out she better get out of there. So we learned today. Learned we need to space the therapists out with naps or down time in between. That brain rewiring is hard work.

The other thing we learned is that Meagan is making great progress on her own. She doesn't want to feel pushed or challenged. Part of that I think is the brain injury and part is just her personality. She'd rather spend rehab time with friends and socializing than "working" at skills which will come back slowly. There is no real incentive for her to accelerate the process if it means being tired, cranky and not being with her friends. We have agreed to keep doing rehab, but I have to watch the scheduling and spacing. Every day she is showing improvement and while I'm not comfortable having her walk down stairs unaided she is navigating fine around the house. So as long as she is safe, we will go at her pace, for however long she wants.

It does put more pressure on me to be her social secretary since she doesn't have the skills or capacity yet to organize and manage her own schedule. Selfishly I wish she would want to work harder at regaining those self management skills (use of telephone and keyboard for email, Facebook and conversations). But I understand her frustration and learning curve and how tiring all this brain recovery is. So it's a cabana/stroke boy job.

Day One of Reahabilitation

Meagan is adjusting quickly to being at home. She is able to navigate safely from family room to bathroom and bedroom. There are still funny lapses. Daisy was hungry last night pretty late - needing her pre-bedtime snack. Meagan decided to feed her and I decided to let her. We keep the dog food in bins in a closet in the bathroom off the family room. Daisy's dish is elevated, hanging on a flower pot holder just outside the bathroom. Meagan walked past the dish (normally one would grab it on their way in to fill it) and into the darkened bathroom. I could hear the closet door open, heard some rustling of the bins, heard the cup we use to measure out the quantity of food hit the deck, and then heard silence for a while. Then, "honey, where's the light?". I helped her remember where the lights were and how they went on and off, showed her Daisy's dish, and we successfully teamed up to get her fed. I was proud of her initiative and she is clearly feeling more able and confident to try things. So I am really glad that today is the first day of rehab - to help continue to boost that confidence while augmenting with skill building.

The Dawn of a New Era

First a recap on how she is doing. Then some thoughts.

New Duties, New Blog Title

I guess it was not enough to be a cancer cabana boy. I thought that was a pretty worthy challenge. It was a knee buckler at times, but the work was steady and the client great, even though the pay was lousy.

But sure enough, just like back in the days at Microsoft, when you get good at something, they pile more work on you. Now I have the added responsibility of taking care of a stroke victim. Same client, same lousy pay, same steady work. Just a lot more of it. I am on another steep learning curve - the brain is a marvelous contraption and in an abstract way I am fascinated by the changes which have occurred within Meagan and how she will adapt. Hopefully the rehabilitation people will help her make great strides quickly.

She's Home!

Meagan is happy being home. She got to kiss the dogs, although they nearly knocked her over (well, one did). She walked in her lovely garden on Casey's arm. Had a long talk with Casey. Ate high sodium Chinese food. I can't say our first night home was restful for me, but perhaps she will have a different take. She has to take pills at 9pm, midnight, 6am, 9am, noon and 6pm. So I have multiple alarms set. We also aren't letting her walk anywhere unaided, she's too unsteady and isn't used to her visual field deficit yet. So there was a 3am bathroom run. Bobbie Baker had a brilliant idea to get a baby monitor so when I am up and she wakes up she can call me and I can help her up and out of bed. We tested it at 6:15 this morning and it worked perfectly although scared the heck out of me as I was drinking my coffee. But she's back in bed and hopefully will sleep until 9am. It is a very unnerving experience to be in such a quiet environment after nearly two weeks of noise. Today will be a day of calm, and adjusting to her surroundings. We did have railings installed on the front porch steps, and I hope to get her out and down the block at some point today. But overall a smooth transition, she's happy to be home, in her own bed and chair, and with two of her men and dogs.

Fwd: Good news ! Going home today!

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> Got medical clearance. Staples were taken out. The discharge process can take hours. Including getting prescriptions filled here which our pharmacy may not have. Don't know the ETA but it's today!!
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Friday Evening Update

Meagan is contentedly watching "When Harry Met Sally" on her laptop, snuggled in her hospital bed, wearing yoga clothes, with her cashmere shawl around her shoulders and her wool hat on. We enjoyed a hospital meal, although enjoy is not really the word I'd use. She is feeling quite good. She is very tired, overly tired due to the large number of assessments foisted on her by medical staff here. Most if it is all good, it sets the stage for therapy and insurance approval when they document her status. But it's tiring. And she discovers new things about herself - those insults to the brain. For example she has difficulty with numbers and dates. There are a litany of things about her which have changed, none of which are worth highlighting or listing. It seems too demeaning, and not focused on the positive aspects she retained. Many issues will resolve in time. She's still Meagan. We will pursue therapy actively, and are looking at options including a home based service. But she is tired of all the assessments and poking and prodding - she doesn't like to fail and when she misses something that competitive spirit comes out. And yet she is remarkably sanguine about it all. As Terry highlighted in her recap - she is approaching this whole thing in a very positive way. Over dinner I recounted the entire last two weeks and she has very little memory of it all. She is sick and tired of being here and wants to be home so she can kiss the dogs and be with Casey. But she will not leave with unpleasant thoughts about this experience or where she is right now. 

We've talked about the process and game plan for her cancer which we will develop with Dr. Kaplan once she is discharged from Harborview. She is aware she has to undergo radiation treatment and then two weeks in the hospital on Interleukin 2. She is quite fine about it all. Timing is all uncertain - brain recovery has to occur first.

In terms of discharge we are eternally optimistic. Her sodium levels have recovered to the appropriate levels - now they just want to see them stable and have decreased the intervals in between checking. They are using an abundance of caution, which is fine. "Que sera sera". When she goes home we want it to be for good. We've convinced the medical staff that we are going home after medical discharge and will deal with therapy on an outpatient or in-home arrangement. We've cited the Meagan's Fairies network as one example of the fabulous support we have. So all the wheels are in motion for discharge, the neurology team just needs to give the go ahead. Her numbers tomorrow morning will likely dictate their decision. It could be tomorrow or Sunday or Monday. We will let the docs do their job and exercise their judgment and we will be fine either way. Tomorrow really is a day of rest for her - she did have over 5 assessments today and they are just draining. Stroke victims need their day rest!!

I am incredibly impressed and proud of her - I do not think I would be approaching this situation with the grace and optimism and joie de vivre she displays. I think you will all be quite relieved and happy when you have a chance to visit or talk with her. And that bad ass scar - wow that is one impressive momento.

Nick

The Top Ten List

Things I've learned during our 252 hours (and counting) stay at Harborview. I reserve the right to add to this list, after all, there is at least another 12+ hours to go on the day shift.

1. The intersection of 9th and Jefferson in Seattle may be the most interesting and entertaining place for people watching in the City. At least in broad daylight. "Code Zebra" means an escaped patient. They may only want to escape as far as the intersection.
2. Hospitals are no place for sleep or rest. There is a cacophony of sound almost everywhere at any time. ICUs have monitor alarms going off constantly. I really don't know how an ICU nurse sleeps at night, the residual echoes in your mind must be something you get used to It's a bit quieter in the wee hours in the hallways and waiting areas. I use that time to try to distinguish the homeless from a patient's family.
3. It's crucial to stay overnight with your loved one. The accommodations are lousy but the company is great. They have these cushioned chairs that fold sorta flat akin to a first class seat on an airplane. Don't bother bringing jammies, I just slept in my clothes and went home each day for a short while to exercise (that happened maybe every other day ) and change.
4. The medical tribes are fascinating. The nurse tribe is the one you rely on after the big surgery. They make all the difference in quality of care for patient and family. Their skill at needle poking is crucial especially when the veins start to collapse. Then there are the doctor tribes. You have the top gun surgeon who pops by each day for a 30 second flyby. He's looking at things from 30,000 feet. Then the neurology team who come by and do the tests on progress and recommend drugs, dose, quantity and frequency. They are followed by the ICU team that usually has a different point of view. How it all gets reconciled is beyond me.
5. By far the most difficult challenge aside from patient support and advocacy is visitor management. Especially when it's someone like Meagan who loves so many and is in turn loved by many, all of whom would like to visit. Being at the center of that communications and logistics management hub turned out to be far more time, energy and emotional trauma than I imagined. I felt a responsibility to get the word out about status and progress and recognized I was only one who could provide info people wanted and arrange logistics. But next time around I would seek support and turn off my iPhone except for my kids.
6. Without support of friends and family we wouldn't be able to pull this off. From smoothie and food delivery to spelling me, the logistical and emotional support has just been incredible. Thank you, thank you, thank you.
7. Semi-private rooms are nothing but. The privacy curtain is an illusion.
8. Once you are able to get out of a hospital gown, do so. Bring comfy clothes.

More to follow....

Greetings from Alcatraz

The scratch marks on the walls marking time are running together. We look longingly out the window at freedom and light. Maybe maybe tomorrow will be the day.

Meagan is doing very well. Right now she is cozy in her hospital bed watching a movie on her laptop She ate all her good high sodium food today. She is in good humor and comfortable, if a little exhausted. Her sodium levels have stabilized so far. I suspect the neurology team will give the medical sign off tomorrow.

The therapist team is another matter. While we clearly recognize the insults to the brain she has received and the resulting impact (visual field, memory, speech, balance) we think they are mostly resolvable. And can be addressed by living at home and doing outpatient therapy. So we fight that battle tomorrow Which if successful will also allow us to reengage with Dr. Kaplan on the overall cancer battle. Which will start with radiation on her brain tumors once the swelling from the surgery resides. Then on to Interleukin 2. That's the two week hospital stay (boy am i looking forward to that....) And maybe some interim tumor removals for kicks and giggles.

She is remarkably optimistic and anxiety free. The focus is on a high quality of life. Part of that involves how she allocates her time. Her brain needs time for sleep at night and during the day. Stroke victims need this. She tires easily She also needs quiet awake time for herself to adjust to her new physical and mental status and the path to improvement where able, and time with family. Then will be the many occupational therapy visits plus the cancer treatment visits. All this to say she has a lot of demands on her time.

Which pains her greatly because she wants to see all her loved ones who wrapped her in her coat of arms during this ordeal right away. But it just won't be physically possible all at once. And it may take her a while to resume proficiency with Facebook and email. Which for a word and literary gal is a bit disconcerting So we do ask your patience and understanding. We will need help once home and there will be opportunities for all. I'm not letting her near a stove! Driving is out for six months if not forever (hard to be a safe driver if you have no right peripheral vision) so we may need chauffeur help too!

Once again thanks for the many expressions of support. We hope to be out of here soon and on to the next stage of this adventure.

Day 11 (depending on how you count)

Finally up to neurology acute care. She's de-hooked from all monitors. Blood draws every eight hours to check her sodium levels. But all the medications to reduce brain swelling seem to be working. She'll still be on a fistful of pills each day even after discharge but she has no problem with downing them.

She gets evaluated by a therapist today. If she gets the thumbs up she could be discharged Friday. They will be evaluating her capabilities around balance, independent walking and strength as well as home conditions and support. If they feel she needs more time then they'd evaluate on Monday and we'd likely then get her discharged Tuesday. Discharges don't happen over the weekends. This all presumes her sodium levels are stable and her surgeon gives the ok.

A big thank you to all who have and continue to support us during our stay. We had dear ones drop off high sodium items as needed - Odwalla juices, smoothies, French fries, portabella mushroom sandwiches with yam fries, and carrot cake. Amazingly the hospital has no high sodium drinks that are thirst quenching, and only milk as a reasonable option. Kinda tough when you are under doctors orders for water restriction and high sodium. I'm also grateful for those who stepped in to spell me on short notice. As she got out of the woods I felt more comfortable leaving her in trusted hands.

She's in much better shape to receive visitors, particularly if we are stuck here over the weekend. She tires easily and may need to drop off for a power nap but other than that she's regaining strength rapidly. She's making great progress on her speech, you'd hardly know she has aphasia. She does lose her train of thought from time to time and she has lost memory of some events and has some short term recall issues - hopefully all resolving in time.

Our "room" at the hospital is small and shared. We have a curtain for visual privacy but there is not much space for anything beyond her bed and two chairs. So please, no flowers or gifts. When she's home the best gifts will be your support through the network Bobbie Baker had set up. We will need support.

I've learned a lot through this stay. The value and importance of friends clearly at the top, along with their willingness to augment our supplies here. It's true about hospital food, it's pretty bad. The need to be your own advocate, but most importantly for the caregiver to be vigilant and questioning. There are too many opportunities for slip-ups in transitions. The importance of being right by her side day and night. She's needed the trusted companion there, because stroke victims can be confused and even if you are not confused due to brain injury or sedation you need to be the one she looks to. So it's a lot of sitting or "sleeping" by her side. Hospitals are noisy places, you don't really get sleep. Last night she (and therefore I ) were awakened 4 times from 1am on for blood draws, pills, vital sign checks, and a bathroom visit.

There are many more things I'll write about eventually. Once we are outta here. And once I've recovered myself. I really do look bad, hahaha.

Nick
206.920.7364

It's moving day!

From intensive care up to acute care, both in the neurology wing. Great news, it means one step closer to discharge. And it clearly means Meagan is getting better physically. She continues her progress on speech and memory. Tomorrow it's standing and walking. Thanks to doctor's orders she's on the high salt diet - fries, bacon, soups. The opposite of the anti-cancer diet but it's what she needs now.