Friday, April 29, 2011
Thursday, April 28, 2011
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.
Wednesday, April 27, 2011
Tuesday, April 26, 2011
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.
Monday, April 25, 2011
Sunday, April 24, 2011
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.
Saturday, April 23, 2011
Friday, April 22, 2011
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....
Thursday, April 21, 2011
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.
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.
Wednesday, April 20, 2011
Tuesday, April 19, 2011
Monday, April 18, 2011
Meagan is doing pretty well this morning. It's hard to sleep when they are waking you up every two hours to give you pills, an IV infusion or worse to have to tap a new vein to draw blood to check her sodium levels. Her veins are shrunk due to dehydration so it's a painful process if they have to put in a new line. She is very thirsty ("I want water"), but she is water restricted. She hates V-8 and tomato juice. Is tolerating ice cold milk. The goal today is high salt and potassium smoothies I think. We are hopeful she can switch to salt tablets at some point today. They have to bring back to normal her sodium levels slowly. "Cerebral sodium wasting" is a funny term for a bad condition. For some brain surgery patients a few days after your brain just tells the body to dump sodium. That alters the water balance in your body and brain and as a result your brain swells from too much water. Not good. Causes severe headaches and impairs functions up to unconsciousness. Until her body resumes balancing electrolytes and fluids naturally she has to have infusions and testing.
Her aphasia is improving steadily. She's gotten much better at getting the point across even if the words aren't right. But it's still frustrating because sometimes she can't find the right words and we can't guess. And then every once in a while out pops a complete sentence with complex words. The docs are hopeful this condition is not the same as from the surgery but just a reaction to the swelling and that it will improve rapidly. There is no change on her restricted field of vision on right side. When she is looking straight ahead she can't see anything peripherally. We are told likely permanent so coping mechanisms are what she will learn. She also has balance and weakness on right side.
She's regaining her appetite and we are on the road to regaining her lost weight. She's pretty specific about what she does and doesn't like. Mashed potatoes and gravy have been good.
There is sort of a plan. Get her out of ICU (and therefore off IVs). Get her back up to 3rd floor acute care with continued monitoring of sodium Get her to sit in a chair and walk a bit. Get her hydrated. That all might take 2-3 days. Maybe out of ICU this afternoon but probably tomorrow based on bed availability. Then once she's able to leave acute care get her up to the 4th floor for intensive physical and speech therapy. Once they deem her capable she can go home and then continue outpatient therapy.
And then we are back to Kaplan, our oncologist, to fight the melanoma battle.
Riley flew back to Pomona last night. We will skype and talk by phone and text often. He will fly back in ten days for a visit and then go back until graduation May 15. After that he returns home.
Casey is living at home but got work off last week and this week. I sleep over with Meagan and he comes down late morning to be with her (today he plans to read her The Princess Bride). That gives me a break for a few hours. He is outright amazing with his mom. I've had two no sleep nights the last week and overnights in ICU or Acute Care are hardly restful.
I believe she will be able to start seeing visitors once we get her to Acute Care. On a metered basis. Stroke victims (that's what she had - her brain tumor burst and hemorrhaged blood and filled brain cavity) get overstimulated and tire easily. She's working so hard on her language and a lot of mental effort to figure out her situation and remember her long term condition and it's frustrating. But she still laughs and her personality is all there. There are some definite words she is always able to get out when she is frustrated if you get my drift.
And she's sporting a new look! Head is mostly shaved, a bit ragged but we can smooth it out once all her staples are removed. Her hair will grow back and I'm sure she'll want it long enough to cover over the horseshoe sized scar on the back of her head. In the interim she is wearing one of her beautiful wool hats.
Sunday, April 17, 2011
Ahh the life of a cabana boy.....
Moral of story? If things start going south don't just listen to the old hounds. I'm going to give Ethel a piece of my mind when I see her next Be vigilent and don't assume. Insist on competent exam. Advocate. I raised enough concern they had to respond. Fortunately the doc who showed up had seen her when she was in ICU and saw instantly the profound negative change. Glad we stayed within the system. And glad they have CT scans that can crank out a scan in 2 minutes!
Saturday, April 16, 2011
Friday, April 15, 2011
She needs rest today especially with room transfer and anticipated therapy so we are going to be strict no visitors. She's supposed to be transferred out of ICU this morning to a standard hospital room here at Harborview, not Swedish, because we really don't expect her to have to be hospitalized much longer beyond Monday. They don't discharge over weekend. They want to get started on physical therapy and speech pathology intensely because of her field of vision issues. Once out she will need to continue these on an outpatient basis. Once home she'll need support while she regains strength and motor skills and vision compensatory skills. She's already getting quite good at word circumlocution to compensate got her aphasia.
Oh and her butt hurts from so much lying down.
Wednesday, April 13, 2011
We are all pretty tired but sharing the load. She's never alone. tomorrow she'll work with a speech pathologist. Ok enough
Tuesday, April 12, 2011
Monday, April 11, 2011
I mean, I wouldn't want anyone else to do it. But the uncertainty and having to be ready is really hard. I know there are effective treatments for brain tumors (gamma knife surgery, which is targeted radiation). But it would still be very challenging news and cabana boy would be working double overtime to handle the fall-out. At least we will be hearing the news from our oncologist. And we are headed to Bethesda for the best treatment possible, irrespective of where her melanoma is landing.
Friday, April 8, 2011
Brain MRI today, results due Monday at our visit with our oncologist - the NCI required one because there are some trials you can't be on if you have a brain tumor. We didn't really want to do this - would rather have waited until something presented itself symptomatically. So we do have stress over the weekend until we hear. And we want to hear from our oncologist rather than the NCI people.
At least by Monday afternoon we'll know, and will be ready to fly back Wednesday with all the scan CDs and reports in hand from head to toe.