My Mom
I’m condensing this post from a few emails I’ve sent round, so this will be a chronological record of how the information has come to me and such.
Wednesday, April 22nd, Mom went in for a scheduled round of surgery.
There was a laundry list of stuff to do:
repair or replace both the mitral and tricuspid valve
replace the aortic valve (same as me)
Maze Procedure/Ablation to try to kick her out of the 4 years running atrial fibrillation she’s been in
replace the “jumper cables” on her pacemaker (iPod)
a bypass (dunno where sorry) as it was occluded 80%
The surgery ran maybe an hour longer than the projected 6 – 7 hours due to the amount of scar tissue encountered (from previous surgeries), they didn’t do anything to the mitral valve as it was only leaking 1 on a scale of 1 – 4, but otherwise it went well, the surgeons were pleased.
That’s the good news.
However, she won’t wake up. The CAT scan and EEG’s don’t show a stroke. They’ll repeat the same tests tomorrow (Fri 4/24) which will show if there was one today (Thurs 4/23). As I’ve been running a low grade temp this week I can’t go down there even. Marissa is there of course, staying downtown, losing her damn mind. As much difficulty has I have w/my mom I sure don’t want this.
I know that if she’s at all conscious of this, which I don’t think she is, as there are hardly any arousal signs on the EEG according to Gregg, but if she is, she’s fighting like hell. Stubborn and not giving up on life would be two core descriptors of my mom. Still this is awful.
I don’t know much more because when I talk to Marissa, she’s wound so much tighter than usual, I’m afraid to ask her anything and stress her more. It’s just not worth the added stress for her. I know she’s bird dogging the Drs.
So, I”m a lil stressed, frustrated and anxious, waiting for a few calls a day from Marissa or Gregg w/status updates.
I’ll let you guys know more when I know more.
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Just got off the phone w/Marissa (mid-morning Friday 4/24).
She’s waiting for the full team of Drs to make their rounds, they’ve not yet done the CAT scan today yet either, so we don’t know a lot more.
Her sodium is high, they’re working to bring that down, and for some reason her right leg was spasming all night long on and off, got kinda beat up flopping off the bed when Marissa or the nurse couldn’t catch it.
Marissa finally took a Xanax and got about 3 hours sleep. She’s not yet been to the hotel room, she canceled it. I think after the Neurologist comes by she may run home for a shower and change of clothes.
So far today my temp has held steady at normal so if I can hang in there for 24 hrs. I’ll be headed downtown too.
Feel free to call or text my cell at any point.
I’m keeping Skype up so they can reach me there too or call out clearly.
(If you don’t have those contact numbers, email me or comment below and I’ll send it to you “on the side”.)
I’ll send more info when I know more, thanks.
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Here’s the latest (a/o about noon Friday 4/24):
Her EEG shows signs of seizure-like activity in the right hemisphere, consistent with a stroke.
Her vitals are still solid.
No idea at this time the extent of damage or the duration of the seizures.
She’s on anti-seizure meds.
The EEG was discontinued at noon instead of 3 pm as they’d already gotten the information noted above that they needed. Some time after noon they’ll perform another CAT scan.
Marissa is on her way home for a shower and clean up and change of clothes, will turn around and head back afterward.
A stroke is one thing Mom was particularly scared of having happen, this will piss her off to no end, which I hope will work in her favor in recovery.
That’s all I know right now. Thanks guys.
Madame Maracas' Blaaagh 
Just got off the phone with Jonathan, got the mini update for the evening from him.
He was able to stop by and visit with Marissa a little bit. She’s understandably a wreck.
The CAT scan was done, and they confirmed that Mom suffered a stroke of interminate size & severity. She appears to not be mobile on the left side (classic for a right side brain stroke), however she does move about quite a bit despite this.
I’ll update when I know more, thanks again for your thoughts and well wishes.
– Julia
madamemaracas
April 24, 2009
The latest update:
Mom’s having kidney failure, they’re giving her meds.
They did send my sister home though so she’ll get some sleep tonight thankfully, hopefully
madamemaracas
April 24, 2009
Mom’s responded to the meds for her kidney failure, which is good. She’s thrashing about less which is not good.
Marissa got some sleep is back on duty at her side.
As it’s the weekend, there aren’t really any tests or stuff scheduled, barring something drastic happening.
Thanks again for your thoughts, wishes and support.
madamemaracas
April 25, 2009
(Hugs) I wish you the best. It is so hard to go through this, my thoughts are with you.
Isle Lunasea
April 25, 2009
Julie-I just heard about Aunt Judy. I wasn’t aware she went in for the surgery already as I haven’t been on FB for awhile. I’m thinking of you all and will keep checking back for updates. I am so sad about this turn of events and hoping beyond hope she comes out of this. Love Stef
Steffi
April 25, 2009
Thanks for your support. I have been cross posting all over the web to get word out, as I know everyone doesn’t check every site every day. I’ll pass along your well wishes to Marissa and everyone as well. As it’s the weekend, we’re just waiting and watching. Me from home w/my stupid temp, Marissa there bedside.
madamemaracas
April 25, 2009
The latest:
Lara flew in from NYC and is there w/her, this will help Marissa a great deal, as Marissa actually will listen to Lara more than just about any of us.
Mom’s tracking (w/her eyes) Marissa and Lara, but doesn’t seem to want to do that for the Dr.
They’re still bringing her sodium down.
Her vitals are still good
Marissa insisted that they check her electrolytes and they found they’re out of balance, that’s being addressed now.
She’s flopping about less now.
madamemaracas
April 25, 2009
Ok, power’s back on here at home so I can send out a mega-update.
Just got back from the hospital, was there for a lil over 4 hours with Marissa after my visit w/my cardiac surgeon. I’m no clear to drive, they were very happy w/my NON-leaky valve and brand spankin’ new aorta, well how they sound at least. Pops dropped me at the EL so I could head downtown & he could go munchkin sit. Busy day.
Mom wakes up every so often, to varying degrees of alertness, as the night went on they were more frequent and she was more clearly responsive. She’s a night person, apparently as a patient as well, so this was par for the course. She was able to track me or Marissa w/her eyes and even turned her head and eyes in unison at one point.
She reacts to discomfort due to some adjustments made to her position in bed, clearing her “tube” (terrible gagging face she obviously hates that). She didn’t seem able to grasp with her good hand (right side), nor respond to stimulus of her foot or leg, although she would move the right leg when in great discomfort. At one point she did move her head and shoulders a bit, again due to discomfort.
She did look at the overnight nurse where she wouldn’t at the day nurse. When Marissa put the girls on the phone and held it up to her ear, it was clear she was reacting to them as well. Frequent, more deliberate blinks are the main thing. It is tough to describe but at times you can tell if she’s focused on you or just staring, you just know. Most of the time her eyes opened she seemed “there” but dopey, one time she was just sorta staring.
The Drs are yet not sure why she won’t really wake up, and they’re specifically saying this might not be a stroke but something metabolic. They did a CT scan of her chest and abdomen and found she does have a touch of pnuemonia, she was already on a broad spectrum antibiotic, so hopefully that’s already being addressed. The cultures take a day and longer to grow to be sure if they need to dial in a lil tighter on the antibiotics, so we’ll see about that.
She’s draining fluids (tubes and “normal” stuff) at a decent rate, so that’s encouraging. They’ve upped her water intake to try to more aggressively combat her stubbornly high sodium levels. Her heart rate and blood pressure are fine, with in the tolerances for someone that’s had surgery (the numbers are weird against normal expectations I can tell you from experience), she’s really not using the pacemaker either, so that’s very good.
She’s still in A-fib, however the Drs were very clear that it can take a few weeks to know if the Maze Procedure/Ablation has taken effect or has failed to truly combat the A-fib, so that’s neither here nor there. They’re administering Amioderone, which has worked well for her in the past (the stuff I’m freakishly allergic to, although it did convert me out of my A-fib).
Her “color” is good, another lay type indicator of her cardiac function. Her arms and legs are a bit swollen but even while I was there I could see her left arm, the worse of the two, come down a bit, the forearm esp. not so much the hand.
Marissa looks tired, but was able to eat a meal while Mom was getting her CT scan. Tomorrow I’ll get Zippy (the car) an oil change) and head down there again. Please keep in mind, while we’re in the room the phones are switched off, we gotta go down to the lounge area to talk/get messages.
I let Mom know you are all pulling for her.
((To those that aren’t aware, the storm the Saturday night whacked the three power transformers outside my window and then the one IN the building died Sunday morning when ComEd returned and turned on the juice. I’ve been w/out power, elevator, hot water, etc. for a few days here. Our elevators both apparently bit it, and one should be fixed tomorrow, the other looks like it will take a week or more. I’m fine, prolly lost a fridge full of food, but that’s about it. I can do the stairs, slowly, it’s good exercise, if hateful to the knees. Go Tylenol!!.))
That’s the report folks, thanks again for all your support and thoughts and well wishes.
madamemaracas
April 27, 2009
Hey sweetie, just dropping in to check on progress. Sending you my best – ❤
Phaylen
April 27, 2009
Just got off the phone w/Aunt Rhoda who just spoke w/Marissa. Mom is up and able to blink respond accurately to questions! They’re waiting on neurology, hopefully the “tube” will come out and we’ll see if she can speak. I’m ducking out now for Zippy’s oil change and heading downtown. Cross your fingers folks!
madamemaracas
April 28, 2009
Ok a few updates below in chronological order …
a/o Tue, Apr 28, 2009 at 9:39 AM
(I’m responding some emails for folks that don’t get to the website or soc. media updates)
She does get a lot of chatting, Marissa in particular, as she responds to her best (as far as last night) talks to her whenever she rouses, encourages her, updates her on the surgery sucess (as the stuff they went in to do DID go swimmingly) and how she loves her and misses her and is waiting for her and that Mom promised her to survive this. That’s the hard thing to watch and hear tbh.
We tell her who has sent well wishes, and all that good encouraging stuff. Guess I shoulda mentioned that last night, but trust me Marissa’s been “stimulating” her whenever she’s at all conscious, even when she’s just trying to cough or something like that. She’s a helluva nurse.
madamemaracas
April 29, 2009
a/o Tue, Apr 28, 2009 at 11:18 PM
Today on the whole showed a lot of steady forward progress.
Her temperature came down. Her sodium is now in the normal range. Her vitals were mostly solid, dipping now and then mostly due to being agitated, moved or something like that. She was able to answer questions clearly all day, showed surprise and humor as well. She is able to move and exercise her right leg quite well, flex and grip with her right hand and to solidly wiggle and contract her left pointer finger. Her left leg seemed only to move when her whole body was contracted with discomfort (clearing out the goo in her mouth, it’s a gaggy, terribly uncomfortable feeling), but not on command.
Her breathing is good, her lungs are clearing, and the projection is that sometime tomorrow morning, the tube/vent will come out. This will be huge as I expect she’ll have a few things to say!
To give you an idea of how she’s doing, at one point Marissa asked her if she wanted to watch tv, we got a strong yes, then she asked if she wanted CNN, another strong yes, she then “yes’d” for CNN headline news. Peter Slotwiener (via text message) took this as a great sign, as if she’d asked for Fox News, we’d KNOW for sure she’d had a BAAAAD neurological event! Also when we reported that Arlen Spector swapped to the Dems, as reported by Rhoda, her eyebrows shot up!
She works her leg and hands when she’s conscious, and tries to work on her breathing too, as these are the things, we keep telling her, that will help get that tube out, and get her up and rolling about. She just works it every chance she gets. Also, her between times were notably sleep, not unconsciousness, compared with yesterday, she looked much more normal and just sleeping relaxed face when “out” than before which was sort of a mixed bag. Very encouraging.
The doctors are still really not willing to call this a stroke, one of them when Marissa asked about it, suggested that we may never actually really know what happened, but if he were to hazard a guess, it’s a few things that happened to add up to these symptoms, but overall it’s a metabolic thing that’s numbed out her left side. The good thing about that is it doesn’t mean brain damage, and does mean that recovery should be much easier. Based upon the progress I saw between yesterday and today, I’m very willing to go with that assessment as the main root of the issues.
She still may have had a stroke, or a flush of blood to the brain that kinda traumatized it or just that the sodium & electrolyte levels being out of whack did this, but really he’s thinking it is a smattering of those three things to varying degrees. This was discussed out of the room, out of earshot so as not to upset Mom.
Tomorrow I start my own Phase 2 physical rehab and may not be able to get downtown, we see. The elevators are still out despite mgmt’s best efforts, but otherwise things are working in the building again.
Again, thank you all for your support and kindness, I know Mom really appreciates it!
madamemaracas
April 29, 2009
a/o Wed, Apr 29, 2009 at 7:32 PM
I got word from Marissa today that the TUBE IS OUT & she’s a bit too hoarse to talk, but the function is there. I guess she’s kinda squeeky from having been intubated so long, it’s to be expected. She also was able to move her left foot! So 2 huge strides if you will toward full function. Marissa held the phone to her ear and I was able to say a few encouraging things. I am not sure how long she’ll be too hoarse to talk but she’ll have plenty say I’m sure when she can really speak well.
When the neuro types were testing her awareness etc. they asked who the President was, she said Michelle Obama. Um … some of the Docs got the joke, some didn’t LOL. Another very good sign.
Marissa sounded about 16 billion times better, as one would hope, so that’s also a great relief.
My today was about being sore from stairs as the elevator is still out and I had my first round of Phase 2 cardiac rehab. It went smoothly and the folks there are really nice and I am confident they’re gonna work me hard and smart. I did 6 minutes on the walk around the building track, then I think it was 12 minutes, 10 plus at least, on a sorta pedal bike and arm pushy thingie, the we did some simple weights and stretches that felt really good. This is gonna help w/the weight loss too of course so I’m very psyched about this process/project. Oh and remember I’m driving myself around, that’s a nice thing too!
A good day all around gang, so nice to have good news to report. Now if we can get the elevators working again!
madamemaracas
April 29, 2009
Got a text message from Marissa, Mom’s having a bit of a set back.
Problems breathing & w/heartrate overnight kept her from sleeping well.
Her sodium is back up and asymptomatic.
Mom was sleeping at that point so Marissa text’d me.
I don’t know if this alters the plan to move her to a room out of ICU or if her ability to move body parts has regressed either. I’ll be heading downtown shortly before my rehab this afternoon, I’ll post info later tonight when I get home again.
madamemaracas
April 30, 2009
a/o 2 pm 5/2/2009
Over the past 2 days, Mom’s been battling back from another round of infection (dunno cause), her temp is down now. Her sodium has also been brought back down again.
Although they had to re-intubate her, it’s looking like she’ll get that removed shortly (again).
She’s able to move her left side a bit more now, no back slide on mobility thankfully.
She’s yet able to communicate, conscious and aware.
Rhoda’s been keeping me posted. Tomorrow I should be able to get downtown for some quality visit time.
Marissa was able to do a few things with the girls, so that’s doing her some good too.
Can’t thank you all enough for your support!
madamemaracas
May 2, 2009
a/o 5:27 pm 5/5/2009
Just spoke w/Marissa, Mom’s doing good. No temp, white count and sodium where they should be, increasing mobility and overall strength daily. Tomorrow hopefully Neurology will be able to do a re-assessment, as the last one was done when Mom was still the apparent victim of a stroke, vs. impaired by biological wackiness (sodium & electrolytes out of balance, etc.). The delay there is the Neuro Doc is out of town on a family emergency, so we’re not sure when they’ll be in, as they were expected in today.
This is a no news is good news report folks.
I didn’t make it downtown as I seem to have spiked a tiny temp again, grrr. Only 99.3 but enough to be cautious about and stay away. So we ALL send our thoughts remotely!
madamemaracas
May 5, 2009