Sunday, May 31, 2009

Rainbow.

After this next operation for the pacemaker, I hope we only see progress towards recovery. It's so difficult to keep taking steps forward only to fall backward. I'm not sure how much more of this any of us can take. Dolly is mentally making such wonderful progress with her speech and understanding, although she is having trouble distinguishing between basic functions such as smiling versus sticking your tounge out or making kissy faces and breathing. It's been mostly the physical that has the set backs recently. She has been totally there, mindful of each step she is taking (not literally) and able to tell us stuff even we have trouble remembering. It seems that she has trouble with the very basic. Baby stuff. The adult stuff has been cake. She knows when she 'has to go' and she communicates very well what she needs. She read some words today from a list Kathy was writing of questions. She wanted to see it, and we asked her to read the list. She got a lot of the words right, even in poor quality penmanship of quick notes.

On my way home, I followed a rainbow. I don't normally make it a point to try to get a picture as I am driving, but I was safe...no worries.


It was much more beautiful in person, and it gave me a feeling of peacefulness. Tomorrow will be a great day.

Another day, another new Mom development

Mom's new team of docs here in Internal Medicine dept. at Brigham's have gotten cardiologists involved with how to asess the danger of that 8-second lapse she had last night. After the stroke, all her doctors have tried medications in many different combinations to control her a-fib but mom's heart rhythm has not found the stability needed in order to move forward with her rehab plan. After assessing her case today, the team of cardiologists have deemed mom a good candidate for a pacemaker.

The operation will take place tomorrow. I am so excited about this. We've been in "officially" limbo since Saturday morning, but it's really felt more like we've been in limbo since Friday late afternoon when we originally left Brigham's for Spaulding. Nancy, Matt and I were filled with excitement and anticipation for her rehab, but it was tempered by worries and real concerns about her previously unstable heartbeat, which had been sort of dubiously "stable" all day Friday.

The whole ordeal of mom's a-fib putting an immediate yield to the rehab plans -- the forced mental shift of coming back to Brigham's -- a wide U-turn -- moving two spaces backwards on the big board game of the whole experience of the stroke aftermath -- it's been deflating to be honest. With no less belief that my mom will improve with aggressive therapy, no doubts about her complete commitment to her recovery and with the total belief that she will use every ounce of juice she has to recover her mind and body as much as she possibly can, it's still a bummer to have to "Plan B" her when we want to get "Plan A" in action ASAP! So, with today's developments, though the future is never certain for anything and this is no diferent, I'm just so happy that we are making progress and now have a viable,  calculable, more realistic tool to get mom back into progress mode, moving forward.

Speaking of those little setbacks and how, no matter what they are, they can sometimes make you feel  deflated when you were wishing for a different outcome, I have to give a big shout-out to "Sister Power"! Nancy helped me laugh a lot during our ER day on Saturday. While we were held captive for four hours in mom's curtain-walled square, we did a goofy craft project that Nancy bought for us in the Gift Shop, we choked back laughter over the patient next-door's outrageous requests and complaints (seriously, a writer for "ER" could not have crafted a more perfect dialogue), and we chuckled over a couple of other things which I dare not mention here! If you ever find yourself in the position of hanging out in an emergency room for four hours on a Saturday taking care of your poor mom, make sure you have a funny sister with you! :)

Mom on Sunday morning

I just wrote a ginormous blog post on my iPhone here at the hospital, using a new blogging app I downloaded. (I have been at the hospital so much that I have not even posted to this blog yet and, well, that's a little ridiculous!) Anyway, I got a phonecall while i was composing the last paragraph. Wouldn't you know it, the app is not smart enough to save my draft while I answer the phone. Fatal flaw!

Last night, I got a call from Brighams at midnight. The phone buzz woke me from a sound sleep. I immediately called back. I hate to say it but I was scared and fearing the worst. It turned out to be a non- emergency... and kind of a funny story.

Nurse Kim had been performing a routine EKG on my mom. At the same time, mom was transitioning from an a-fib state to "sinus" (this is the name for a normal heart rhythm state, in "a-fib" speak). Turns out that mom's heart beat stopped for 8 seconds during this transition. The heart beat lagging is said to be normal during the transition, but 8 seconds was a longer time lapse than usual. Kim mentioned it to the Doctor. Mom overheard the conversation and suddenly asked Kim to call us. When Kim wanted to know who to call and what number, mom reached behind her pillow and produced a slip of paper with three names & phone numbers on it...

Earlier in the day, mom had asked Julie to write down our phone numbers for her on a piece of paper. We did not know when, or how, the numbers would come in handy for Dolly. I think we just assumed the numbers would act as a security blanket for mom. Little did we know! Mom wanted us to know about the 8 second lapse and she wanted us to know NOW!

Nurse Kim told me the story. Then she said mom wanted to talk to me. I spoke with mom in the phone. I told her id see her tomorrow. She said, " Come early."

Nurse Kim was impressed by mom. Everyone is impressed with mom. I think she has more packed into her brain per square inch than anyone I know, and it's serving her very well now.
Some interesting stuff that I bet my Mom already knew:
I find myself crying at home alone sometimes these days.
I keep it together in front of Dolly, but seriously, the silliest things can cause a downpour at home. Sometimes, just something to get me started is all it takes. I wish I had something better than paper towel or toilet paper to blow my nose in right now.

Saturday, May 30, 2009

A fib sucks.

Apparently, Dolly has been having episodes of atrial fibrillation for a couple of years or so. Last night at Spaulding, they were monitoring her heart rate, and ultimately decided to let her stay the night after her heart got into somewhat of a steady rhythm. This morning, however, they decided to ambulance her back to Brigham and Women's. Her heart rate was all over the place, even confusing the machine that she was hooked up to. Spaulding is not equipped to deal with this problem.

Kathy and I spent the better part of today in the emergency room with mom. They took some tests and by 4pm they decided to move her into a room on the internal medicine floor where they deal with these issues more than any other floor. Her new doctors were amazed at what this lady has already had to deal with, and they are going to try to get her back to Spaulding as soon as possible. Dr. Robert thinks they will be able to get her heart rate manageable and move her back to Spaulding within 48 hours. They are using small doses of a drug I cannot remember the name of. It has some side effects, but they usually don't surface before 20 - 30 years of use. So, taking her age into consideration, they feel this is the best treatment. Let's hope it works.

The best news we have had all day, is that Spaulding is expecting her to return, she is still a patient of theirs. I just hope that during this 48 hour time frame, they don't give her bed away to someone else.

Moving day

Dolly was moved to Spaulding rehab today.

She was so excited to move out of the hospital, it was a tender moment to say the least. We fought rush hour traffic to get there, Kathy and Matt in the ambulance with mom, and me following in my car. The first great thing I learned about Spaulding was that they are compassionate people right down to the woman who takes the parking money. The ambulance carrying my precious cargo pulled into the parking area past the booth and waited for me. I had to pay the lady. I rifled through my carry on bag which has become my purse, looking for money. I know I had some! I found three dollars in there, but I needed five. I unbuckled my seatbelt to scootch up and check my pockets...no money. I told the lady "I know I have money, just a second"... She said, "it's okay, they are waiting for you" as she gestured to the ambulance 10 feet in front of me. I was floored, this is Boston after all. I offered her up the three dollars in my hand, and she refused it, told me to go through.

When the admitting nurse cut the wristband from my mother that bared her Brigham and Women's info, I asked her for it. I wanted to save it for mom. Odd maybe, but so is the Weller way, we are odd people who collect odd things. I thought she would appreciate it later on in her recovery. As I unzipped my fleece pocket to add the cut wristband, I found my money in there.

"Thoughts from today"

(from an email sent May 21, 2009 12:12AM)
This whole week has been pretty whirl-wind. Now I m in bed, but I can't sleep. Harvard students are talking loudly hanging on the stoop of their dorms across the narrow street just below my open window. Other voices and traffic from Harvard street, and echoing between the buildings from Mass Ave also keep me awake. The voices sound familiar. Some sound just like my sisters. I'm in a strange, delirious, in-between state. I feel that, when I close my eyes and try to sleep, my consciousness merges with my mother's and all the guardian spirits around her.

She gave indication, actually SAID today, that she does not want the plug pulled, she wants to live! She told me that she will not be staying there (at the hospital) but will soon be going to rehab. Yesterday, talking with the doctors, we all remembered her having told us her wish of DNR, do not ressussitate. Now, I can surplant that with this new memory- and that makes me happy. Yet, the reality is still that she is in the stage when her brain is swelling, after such a massive stroke. The doctors are trying to paint a 'realistic' picture for my sisters and I. They refer to half her brain, the left half, as "dead". Obviously, it must not have been the half of her brain that she likes to use because, although severely physically handicapped at this time, she is incredibly coherent, lucid, and opinionated. Even funny. For example, my sister Kathy was in the hospital room's closet on the phone because it's quiet and secluded. Mom kept asking if Kathy was still in the closet. Finally she asked, "Is she locked in there?" We said "No." so mom asked, "Why not?"
Meanwhile, we still have a couple days during which we should expect for it to get worse before better. She's completely paralysed on the right side, has trouble speaking (though she wants to!), is exhausted, can't swallow well.... but is hanging in there. We always knew she was sharp as a tack, but now the doctors confirm, with CAT scans and MRI-s the positive and negative of that. Her brain is much younger than the norm, it has suffered little, if any, of the normal atrophy that happens with aging. Unfortunately, that doesn't leave much room in the skull for the brain to swell, as expected in the process of recovering from a stroke. Funny, huh?
Anyway, I feel better telling you all this.

Also, since I can't sleep, an issue that I have been wrestling with for the past couple days, now, seems to be clarifying. I share it, here, with you. It needs to be edited...

"We have to choose to be willing to go through new and strange and difficult experiences, facing to become new and strange, and maybe difficult, at least different, people.
We have to choose to become these new and different people, different by going through these transitions, these transitory experiences.
and those transitions not always are leading us through death... often they are leading us through life... a life that comes through a process- through death.
then we emerge as new people, who then make different, new choices.
In this situation of deciding –interpreting that a person has made a choice to continue as that same person rather than choosing not to transition and change, i.e. to stay the same person– is deciding that the person has decided to not make a choice... has decided that that other person is already dead, and unchanging. Life is change. Life is the process of life and death, of moving forward. To say a person only wants to continue as the person it has already been, is already death, is already condemning that other person to death. When we take away the opportunity to allow a person a choice to change, that is a condemnation to death. ..."

It feels funny to have this emerge from inside myself, because it is totally different from my prior opinion, which now to me looks like "Life doesn't matter, because life and death are all one."
Now I see them as all one, but in a totally different way: the value and beauty of death, comes after the value of the beauty (and struggle) of life.

I can't tell if those voices are my sisters, and maybe it doesn't matter, does it? What is sister / non-sister anyway?

Friday, May 29, 2009

One Red Bead

Since we have all been spending so much time in the hospital, I brought in some beads and silver wire everyday to crochet necklaces. Mom always wants to see what I am doing. She approves every necklace before I put the clasps on them. A few days ago, Julie said "I want to make a stroke bracelet" and went through all the beads I had with me. She had an idea to use one red bead as the clot that caused my mothers stroke and a different color bead for the body of the bracelet. I thought it was a great idea. I had no red beads with me at the time, so the next day I brought some and we made the bracelets. We showed them to Mom, and she wanted one too. Kathy's, Julie's and mine are all iolite with one red coral bead, we told mom she could have any color bracelet she wanted. It was a bit of a struggle to get her to tell us what color she wanted because the first 3 times we asked her, she would only respond with "one red bead". Finally, she told me that she wanted black. So, I made her an onyx bracelet with one red coral bead. I put it on her wrist when she returned from her G-tube surgery at Brigham and Women's hospital, and she has been lifting her arm to her vision to admire it ever since. When I asked her what kind of bracelet she was wearing, she said it was a "Dolly bracelet" and then she said "one red bead" again.

New perspectives

A few photos from one of our hospital dinner breaks.




Mother's Day: 6 days before the stroke

"What was your mother like before the stroke?" 
This question makes me think more every time I am asked by another Care Coordinator.
She gardened (and when I say gardened, I mean moved trees),  she rearranged her furniture...all the time, she knew more useless information than an encyclopedia, she drove me crazy and 
she was definitely under appreciated.

Thursday, May 28, 2009

11 days and counting

My mother Dolly, had a massive stroke on May 17th, 2009. She is 71, very active, and smart as a whip.

She was in the neurology ICU for 7 days (starting Monday, May 18th), and has been in a shared room now for almost 4 days. Her nurses and doctors at Brigham and Women's have been wonderful. We truly could not have asked for better care. We are grateful for that.

Hopefully tomorrow or Saturday she will be moved into Spaulding rehab. I figured that since I was neglecting my blog during this time, I will start a blog about mom. It makes sense to me. Some pictures may include disturbing decor...so I'll leave you with a picture of my Mom at her 71st birthday...only about 8 months before her stroke.

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