The Tweeny Stage of Grief

The Christmas lights are twinkling, the TV is silently showing Friends re-runs and mom is taking her afternoon nap. I'm reclining in the lazy boy ordering a new compression glove for her left hand and wondering how something so Twilight Zone has somehow become so normal. I don't think I can pinpoint the moment it happened. Kinda like puberty. One day you wake up and everything feels different, but it's not like there was a sign that just says "welcome to adulthood." And I'm just as conflicted. I'm not sure whether to be thankful for the strength to accept and the peace of mind that comes with that, or pissed for the nagging feeling that "acceptance" is another word for "giving up." Currently, I'm undecided, but still fascinated by the whole thing in general.

I mean, yesterday I had a 15 minute conversation with her about her hallucinations and who she would hallucinate if she could choose. The answer is Shel Silverstein and Marilyn Monroe. Not Kennedy because he'd bring his hallucinated paparazzi and not Henry XIII because he'd destroy the place with his horse. Oh and not Monet because he just seems morally irresponsible. And the thing is, it never even occurred to me that this was weird. Entertaining, yes, but not "crazy."

This is who my mom is now. This is who I am now. This is what my life is now. That sounds so dramatic and devastating, like some angsty tween novel, but with the whole puberty metaphor, also quite appropriate I think.

Merry Day-After Christmas

Boring, but I suppose important information. We visited the neuro surgeon on Monday (Dr. sea-foam-green-scrubs Cerullo, not Dr. I-saved-her-life Farhat), who told us that according to her CT scan there haven't been any changes. The fluid is draining as it should be and there's no other damage beyond what originally occurred. He also shared that with this certain type of injury recovery can take a year to a year and a half. Then Wednesday was the visit to the neurologist (Dr. Castle) who said he's going to start weening her off the anti-seizure medication in hopes that she won't be so tired. Since she's never had a seizure, don't think not taken the meds will be a huge issue. He also explained that with this injury she has lost her ability to recognize humor or sarcastic intonation. And that's when we all pretty much decided to disregard everything he said. Mom made a joke about staying at Presbyterian homes long enough to learn how to fly which was really the perfect storm...Mom couldn't possibly have a sense of humor due to the stroke and Dr. Castle DOESN'T have a sense of humor (unless, like my dad has suggested, he too is a stoke victim), so chances are there's "dementia" written in red on her chart now. By the way, she was laughing as we were recounting the story.

Now, on to Christmas. Dad and I went over in the morning with coffee, baked goods and one gift for her to open. We also brought jingle bells, which as some of you may have seen were used during our caroling in the hallways of Presbyterian Homes. I believe we were singing Jingle Bells the first time we caroled through a family having Christmas dinner and I believe we were singing the Twelve Days of Christmas the second time we caroled through the same family's dinner. They didn't seem too bothered by it - in fact they seemed fairly resilient to crazy - but it's not as though they thanked us or joined in. She came home at 1:30 and stayed the whole day. It was fantastic. Even when she decided to lay down, we all just pulled up chairs in the bedroom and I sat beside her while we continued to laugh (take that Dr. Castle) and babble like only our family can.

I wouldn't say she was "pumped" to go back to Presbyterian and she's definitely not all that thrilled whenever we leave her there. It's impossible to not feel like shit when she says "ok, bye" because we all know it's not OK. She doesn't want to be alone and frankly, I don't want her to be alone. I know, I know, I've heard "you have to take care of yourself" or "your mom wants you to live your life," but trust me, those things feel less than true when leaving her. It's a band-aid rip every day - it hurts every time and you never get used to it. Right now I'm sitting in her house, in her kitchen, surrounded by her things thinking about the fact that she's probably in bed staring at the same terrible painting on the wall and giving pep-talks to her left hand trying to encourage it to move. But in less than 14 hours or so I get to go back and reapply the band-aid.

Twas the night before Christmas

It's late. I'm tired. It's possible that this will be riddled with nonsense and typos. Apologies. I just can't not write on Christmas Eve. One of my mom's favorite times. 

Growing up, Christmas Eve was a party. I'm not entirely sure how the tradition began. Chances are it was my mom's brain child. The fact that it involved costumes, performances, and gaudy Christmas gifts are all signs toward a Pam-planned event, but I don't want to go on record giving her credit without knowing for sure. Anyhow. Christmas Eve was a huge deal. It was the moment all of the kids got to perform The Night Before Christmas. We all knew our roles, the girls played the sugar plums, the oldest played Santa, and the youngest played baby Cheezits (small and honest mistake between the center of Christianity and a cheese-flavored snack). It was also the one night a year dad busted out his trumpet and "performed" Christmas tunes. We all sang along. Probably sounded as good as the trumpet. And then of course we all had to wear the "Christmas craft" which all of the girls/women had worked very hard on the night before to make as gaudy and horrifying as possible. There was the year of the reindeer socks, the year of the elf collars, the year of the fairy crowns... the list goes on. But most importantly, it was the thing that first defined family for me. We all know I don't have a huge family, at least not in the "people who share similar genetic material" sort of way. But mom made damn sure that I had family in the "you'll never feel alone or unloved" sort of way. I grew up sharing Christmas Eve with family. For that I can't thank her enough. 

Happy Christmas to all, and to all a good night. 

Relax the shoulders

I wish you all could have heard the sound of my dad's voice last night when he called. It's as if every muscle in his body had relaxed....the muscles around his rib cage, his lungs (ok, not just muscles), his vocal chords. He was breathing. Real breaths. The natural ones. The even ones.

I think I have my dad back. And it's all thanks to my mom.

Yesterday the doctor visited to check on mom's progress. He was "very impressed". Apparently everyone who has been working with mom has been very impressed. He explained that in the beginning her progress was a slow climb, but in the last two weeks she has really taken off. It's been so great that the doctor said he would personally fight for her to stay longer at Presbyterian should the insurance company recommend she move elsewhere.

Maybe it's awareness and being able to make conscious choices? Maybe it's being able to feel the improvements makes her fight harder for more of them? Shit, who knows why "all of the sudden". But seriously folks, who cares?!

No, it's not over. Clearly the road continues. But for the first time in 142 days it feels like we're not just "seeing things," that the progress we sometimes think we see is not just us trying to make ourselves feel better. It's real. Unlike the bats that live in her ceiling. Those aren't real. Right?

Post Thanksgiving Report

I'm happy to report that Thanksgiving went off without a hitch. She showed up at 12:15 and was promptly given a tour to make sure my dad hadn't run the place into the ground. And he hadn't. I even assured her that the condo was NOT full of little piles of things when I arrived - dad's signature style of cleaning or as I like to call it "squirreling".  She was proud and impressed.

We spent the day as (hopefully) every other family out there did - eating too much and enjoying the fact that we were all in one place. Near the end of the day as I sat next to her and watched her enjoy a piece of pecan pie she simply stated "I've really enjoyed today". That's all any of us could ask for. Eventually she had to leave and yes, it was hard, but nowhere near what I think all of us originally expected.

There is a certain determination to my mom (shocking, I know). It would be easy for her to play victim and for us to be wracked with guilt. And frankly that would seem would seem fair considering the circumstances. Don't get me wrong. I know she isn't happy about this less than stellar hand she's been dealt. I think if she could strangle the dealer of this hand, she would. Maybe even bite him/her. BUT, instead she's just playing the hand she's dealt. And playing it well might I add because we all know how she gets when she loses. Sportsmanship award winner she is not.

Holiday Prep

I'm home for Thanksgiving. And the first thing I would like to say is...really, who was the genius that decided to settle in Chicago? This weather is the pits. The only thing that makes up for it is the wide-eyed look my mom gave me when she heard my voice.

Meanwhile, on to all things Pam. She's still improving. It's incremental. So incremental that it's only noticeable to those who don't see her every day. Me. Things like her ability to sit up, lean forward and untie her shoes. Last time I was here she was still having trouble even aligning herself. But I know for Dee and dad it doesn't seem as profound.

I did her nails yesterday while my dad read all of us the New York Times wedding announcements. She threatened to bite anyone who made her tried to make her do exercises outside of the scheduled times. She made good on that threat, but luckily dad's reflexes are in good shape.

And lastly, she'll be coming home for Thanksgiving. Yes, it's exciting, but honestly, we're terrified. Seeing her at home, seeing the very real and very harsh contrast of who she is now versus who she was 4 months ago...it's going to be impossible. And then what happens when we have to tell her she has to go back? How do we tell her that she can't stay? But before I can worry about that though, I can't forget to order the shrimp or she'll have my head.

If you have a minute...

Happy Monday everyone.

Instead of me trying to relay the mundane details of mom's progress, I thought I'd let you just read the notes from someone who is great with the mundane....the insurance case manager. So here it is, straight from the insurance horse's mouth.

"Pam continues to make progress, although it fluctuates depending on her endurance that day.  Rebecca, an OT was on vacation for 2 weeks and noticed an obvious improvement in gait distance and independence.  Pam was dependent with dressing, bathing, toileting and is now max assist. That may not sound significant, but it is progress, and it all adds up over time.
 
Her ability to follow directions has improved as has her head control and self care skills. Pam's left shoulder pain is limiting, but she has increased tone. She's able to maintain sitting balance unsupported for an hour during therapy, which is much improved functional endurance.  She has improved in problem-solving and has reduced pushing toward her right side.
 
Therapists say she has had a good response to therapy overall.  Again, because Pam was so ill initially, her recovery will take longer.  Dr. Eliades feels she will continue to progress."

On another note, I just want to give a shout out to my dad and my aunt. I feel like I've stolen a bit of the spotlight (naturally), but they are truly the heroes. Showing up every single day - literally and figuratively. It's draining. It's all consuming. It's a Groundhog's Day experience except without Bill Murray and constant hilarity. I honestly don't know how they do it. It's a testament to both of their spirits and love for my mom. Many of you have sent me notes of encouragement and love, and those do not fall on deaf ears. So if you have a minute, I would just ask for this quick favor, give them the same love and energy that you have been kind enough to give me.

Dee: deehouston@fuse.net
Dad: stanleimer@sbcglobal.net

Warning to the universe

She's doing fine. Still making small progress, but it's progress. When will she be able to come home? No idea. It will probably still be quite a while. There is a chance that we may be able to bring her to the house for Thanksgiving, but the chance is microscopic, so don't want to get too excited. She did get her hair done! The hair angel (the woman who does her hair) came and made her beautiful out of the kindness of her heart. Didn't charge a cent, which is why I call her the hair angel. Personally I thought the grey was rather fetching, but Pam wasn't feeling it and as we all know, if Pam doesn't like it then it gets changed. The city of Evanston's landscaping department has learned that lesson the hard way. Let's just say she should add "volunteer midnight gardner" to her resume.

In the meantime, we're all just plugging along. Trying to adjust to the new normal. It's not easy. Frankly, I'm pretty pissed at the universe. Hey universe, you're on my shit list. You've been warned. Is this some cruel joke at my expense?

Mostly though, I'm just lost. Trying to look for a lesson. That's all you can do in this kind of shitty situation, right? Figure out how to adapt and how to learn something, anything, just so at the very least this experience doesn't completely take me down.

So far, this is what I've got:
1. Somewhere there's a lesson in all of this
2. No, not everything happens for a reason

I'll keep looking.

Love each and every one of you. Thank you for being a constant force. My promise to you all is that I will continue to fight as hard as she is and continue to become the human I know my mom expects from me. Until then, bare with me.

The Harsh Reality

So, first of all, the update with mom is that she's doing incrementally better every day. She continues to attempt walking every day. She continues to re-learn how to read left to right. She continues to regain her center and learn to balance. The truth is that she will most likely be in Westminster Place for a least a few months until she gains enough capability to be at home. Again. There is path with no map and no defined destination.

And secondly, I want to acknowledge the fact that I haven't written in a while. In general, I want you to know that the rule of thumb is "no news is good news". The reason I haven't written is that frankly I'm just not ok and it's hard to write when you're not ok. Three months ago my mom almost died. The person who is supposed to always be there to fix things, tell me it's going to be ok - that person almost stopped existing. Since then, I've kept myself together (for the most part). I've watched her come back from the brink, open her eyes, speak, try to walk while I also continue to be a daughter, a niece, a wife, a friend and an employee. Have you ever had your mom look into your eyes, cry and apologize for living? Apologize to you for "being a burden"? Because I have. It kicked me right in the gut and I realized I've been holding my breath. I know I need to start living again, not just for me, but for her. But as I start to live and breathe again a very harsh reality is setting in. Here's the truth, my mom is a different mom than she used to be. Which means I have to be a different daughter and a different person than I used to be.

I am overwhelmed.
I am an open wound.
I am always seconds away from tears.

I don't mean to be dramatic, but I DO want to try to help you all understand how very real this pain is to me, to my dad, to Dee, to Rick, to Patty and so on. And in order to exist with this kind of pain, we have to change, we have to be different than we used to be. I can't say enough how much every single one of us appreciates the love and support. But for now, we're in survival mode along with my mom and just trying to rebuild.

The Ghost of Puck

I decided to make a last minute trip to Chicago for Columbus Day. So I'm sitting here at Westminster Place, watching her sleep and enjoying her cable television. Dee and I spent all day yesterday here so she could teach me the ropes. I learned the art of menu ordering for the week...she's sick of eggs (you have to remind her of that), make sure to order the sugar substitute so she can put it on her Rice Krispies, if dinner options look questionable there's the back-up menu of grilled cheese or a hamburger or spaghetti. I learned about speech therapy exercises....push the tongue depressor with your tongue, bite you tongue and swallow, and make sure to use the straw during reading practice because the kindle is a touch screen. I know where the stash of cranberry juice is and I know that sometimes they sneak meds in it, so never accidentally sip the cranberry juice, you never know what it's spiked with.

I also met the PT, Suzanne, she can't be more than 5 feet tall, but she's all business and has mom practicing walking. Then there's Rebecca from St Louis. She's the OT. Young, super friendly and I can tell she loves mom because she banters with her and when mom threatens to slap her for stretching her left wrist too far Rebecca doesn't flinch and simply says "thanks for warning me". Then there's John. He's a young assistant who just graduated from University of Illinois. He's mom's favorite. He laughs a lot, talks to her constantly and takes all of the shit she gives him for moving back in with his mom. All in all, you can tell mom has charmed the folks around here. What a surprise.

As far as how she's doing, her vision has improved a lot with the new prism glasses. She makes eye contact when she talks to you now and her reading is getting better every day. Physically, she's still trying to work on walking. The PT says that she can feel mom trying to activate her left quad, which is great because that means that the connection is there, but she still needs full support when trying to walk. Mentally, she's pretty with it most of the time. Her wit is here, most of the time her memory is here, she can explain the biology of white blood cells, she can deduce the definition of word by it's Latin roots, but sometimes when she gets tired she starts to hallucinate a bit. Yesterday it was about a little white dog and chipmunks. It's just part of the brain injury and she's with it enough that you can tell her it's an hallucination, but of course we both are wondering if Puck has come back to haunt us.

A 3-star Review

I feel as though we'd give the first week at Westminster Place 3 stars. Here's the challenge, these places are used to working with older folks. I don't want to sound ageist. I think older folks are pretty badass having made it through so much life and then have to put up with seeing folks like Gwyneth Paltrow trying to teach life lessons. I'd like to hear a panel of early birders discuss the Gwyneth.

Anyhow. I digress. My original point is that these places are used to older folks who aren't necessarily as physically capable as someone like my mom is...or should be rather. So the PT is not up to snuff. Let's expand on that, shall we? By "not up to snuff" I mean that at RIC they had her up and walking, climbing stairs, doing enough that it really pissed her off. At Westminster she practices sitting up and getting dressed. Really? I mean, come on. I know that everyone told us that RIC was very intense and that everywhere else would feel like "less than" but the reality is that there is risk of regression.

I don't mean to totally poo poo Westminster. All of the folks who work with her are attentive, compassionate, positive and overall perfectly lovely. But the truth is that this isn't a longterm plan for her. This is meant to be the place where she gets strong enough to come home. I assure you that Dad and Dee are working on it. They're launching a full court press because as of now unless we plan on leaving her at home sitting up and dressed then something has got to change.

How we are.

My mom is leaving RIC today. She's moving to Presbyterian Homes, Westminster Place in Evanston. After many different tours to many different types of places, this one won over the rest. It might not be the most swank accommodations, but both my dad and Dee felt as though the level of care is the best and that all of the residents seemed happy. It also happens to be fairly close to home so my dad will be able to spend a good amount of time there, which I'm sure will not only make my mom happy, but also my dad.

Many of you have asked how my dad is doing. Well, he's beyond the need to be checked into the ER for panic attacks, so he's got that going for him. But as many of you can attest to, my mom is quite a life force and that force has been in jeopardy for the last 2 months - he's faced with that every single day. Grief is an interesting thing. Entirely unpredictable. First off, you never know how you're going to grieve, but I can assure you that it's not like you think you would. There are lots of moments of grief and from my experience and my dad's experience I can say that the moments change quickly and often. Obviously, there's sadness - those moments when you remember that she's still a stroke victim and this road is undefined and never ending. And sure you can say "but at least," but that phrase means nothing when you're not in a moment of hope. And hope-moments become fewer and farther between. Not because things aren't going well, but because as things get better it becomes more and more obvious that things will never be the same. Seems cruel really, doesn't it? And then there's straight up stroke rage. It's a term coined by my absolutely amazing boss. Her husband was diagnosed with Stage IV neck cancer years ago and after quite the struggle he made it through. It's a heroing story that I will never be able to do justice to, but one of the results is something she calls her "cancer rage". It's the anger you feel when you just can't cope with it anymore. When you're just over it. When you've had enough of life being so damn unfair. It's when you've worn out every other coping mechanism that is getting you through the day and all you have left is straight up rage. I'm not sure which thing my dad is feeling at this exact moment, but I assure you it's one of those.

I know many of you struggle for what to say or what to do. Trust me, so do I. Unfortunately, as far as I know there isn't really a right thing. I thought a lot about this post before writing it. I'm not writing this to make anyone feel badly about asking "how are you". I'm thankful that you ask and that you care. I don't think any of us could get through this without knowing there were so many people who are out there just trying to help. I'm writing this to answer your question in the most honest way possible, because the truth is that we're not OK, we just are.

I don't really have any other info about Westminster yet. It's another Blue Cross Blue Shield situation meaning that every week they reassess and send to insurance. Then we cross our fingers that she gets to stay a bit longer and continues to get better.

Happy Birthday To Life's Tour Guide

Today is her birthday. She's never been a huge birthday person. I think it's because she sees it as a day that reminds her she's getting older. I mean, none of us like to think about that...well maybe if you're a little girl waiting to get boobs or something. Anyhow, I feel the same way about birthdays and I always have. I truly believe Peter Pan had it right and growing up is the pits. BUT the last two months have really slapped me around and made me reconsider a few things. Yes, I still side with Peter Pan, but since living on a magical island where time doesn't exist isn't an option, I have to face the nemesis of time. I've made the decision that from now on I will see my birthday as a personal thanksgiving. Not in the historically inaccurate way or a day to watch football (*shudder*), but in the "take a minute (after you gorge yourself on delicious food) and think about how awesome life is" way. I will not wax poetic about the beauty of life. I hope each of you knows why your life is beautiful. If you don't, please do me a small favor and take an inventory. And remember "quality over quantity".

SO, thanks to Carolyn, she celebrated yesterday with some of Cincinnati's finest exported goods, Graeters ice cream and Opera Cream Cake from The Bonbonerie. If those two things don't remind one how awesome life is then you might just be hopeless. I'm sure she's celebrating today by doing PT with Heather and OT with Michelle. Hopefully she's wowing them so that this week's assessment also wows Blue Cross Blue Shield and she remains a resident at RIC for another week. If she gets the boot, she will go to one of the many skilled nursing facilities that dad and Dee have been touring.

But that's tomorrow! Today is life-inventory-taking day. The day my mom gets to celebrate life and I celebrate another day guided by Pam on the "how to kick ass at living" tour of life. Thanks mom. I love you.

Notes from the front lines

When I left my mom yesterday she was asleep. It was probably a good thing, otherwise I would've had to look into her eyes and say goodbye. It was amazing to see her progress last week and get to know the incredible staff. By the time I left I was buddies with several of the nurses, the PT (Heather, who mom swears is crazy for "hallucinating" that mom can walk), the OT (Michelle, who mom has given our family's full history to...you know what I mean), the speech therapist (Val, who reported mom was "in a mood" yesterday with a supportive pat on the back) and last but certainly not least the fantastic receptionist. Her name is Deborah and LOVES Stan, because who doesn't. She sits at the front desk and laughs and chats with everyone who walks by. The woman is an angel. Of course, mom doesn't believe that she's making progress, but everyone around her repeatedly reminds her how far she's come. Yesterday she walked with a cane and also climbed stairs. She needs full support on both sides when she does it, but she still does it. And then of course she bitches about it, apologizes to "these poor people for breaking their backs" (which they all scoff at), swears she's going to quit PT all together and then keep on trucking. Her left leg continues to make a little more headway every day and she also is getting more rotation in her neck.

Dad, DM and I started surveying skilled nursing facilities as well. We visited Glenview Terrace and Whitehall (the Disney World of skilled nursing). Both were great, packed with supportive staff, friendly folks and each providing exciting things such as aviaries and ice cream parlors. Here's the catch though, both of those are fairly far from our family nest in Evanston, not to mention epic journeys from downtown where my dad would be coming from after a full day of work. So we need to rethink our search. The place needs to be downtown or closer to home and has to come with incredible post-stroke rehab. You would think that's any easy thing to figure out given the world wide web, but it's much harder than a simple search. As far as we know we have a week to figure it out as she's still supposed to move on September 21st - the day before her birthday. As soon as we figure out what her next residence will be I'll let you all know because I expect a few of you may want to send her some seriously deserved birthday cards.

Oh Frances.

She has a neighbor named Frances who tries to escape daily. She starts with asking everyone she walks by if they can give her a ride. Wait, she's walking around? Yes, with a nurse. They try to keep her busy. This results in her explaining to anyone who will listen how "terrible" this is. It's nowhere near terrible. The entire staff says hello to her every time they see her and patiently explains that they can't take her home. One extra smooth nurse explained that he had taken the bus today, so he couldn't. When he walked by me he just said "I don't want to hurt her feelings". She asked me the other day if I was a nurse and when I said no, she just moved on. To Frances, I'm just chopped liver. Mom doesn't seem that bothered by Frances, although sometimes she expresses her desire to "help" Frances. Seriously though, the staff is a bunch of saints. They're patience and compassion is admirable.

Meanwhile, mom is continuing to work her tiny ass off. I missed her PT session yesterday with Heather, but apparently she was walking on the treadmill. To be clear, she's in a harness, but the plan is to help her learn to move her legs in a walking rhythm. Side note on the PT's - they're all these tiny girls (I say girls, but they're probably late twenties) and each of them seems to have super human strength and unwavering optimism. Again, these people continue to blow me away. Anyhow. She's still working on getting that left leg in walking form. Every day she makes a little more progress even though every night she says she's swearing off the PT. She also seems to be a getting some control over her left arm. Yesterday the OT - Michelle who is also amazing - she put mom's left arm in a sling that hangs from the ceiling and told her to pull her arm towards her right arm. And she did. Hello left bicep! Nice to see you!

Last bit of news, she's almost definitely leaving RIC on September 21st. This is pretty normal - most patients at RIC only stay 2 weeks, so the fact that she got 3 weeks is awesome. Where to next? I have no idea yet. We have to choose a skilled nursing facility, which is overwhelming and totally daunting. I've started making headway with the different therapists to try to get their opinions. They've all given me things to ask and look for. That being said, we have no idea which place is "the best" which is obviously what we want. If only The Ritz had a rehab center.

Notes from Rehab

I've been here about 3.5 days. I get up in the morning, do a little work, pack up my computer, head down to RIC, talk to her, help her through therapy, do some more work, talk to her, help her through therapy and so on. Dad usually shows up in the afternoon and immediately she likes to tell everyone that "the cleaner" is here. Hey, if he's going to have a reputation, I don't think being notorious for his cleaning skills is a bad one.

Some of her days start as early as 8am. There's a lot of OT and PT throughout the day. Both of which she says she's "sworn off" because they hurt too much, but then in usual mom fashion, after she's done giving everyone attitude she does it anyway. She's just making sure they know who's boss. I'm pretty sure it's clear.

Therapy wears her out completely and she gets frustrated with herself. "I keep telling my leg to move and it just doesn't do it." Cue some tears...from both of us. Then cue a small pep talk - starting with sincerity and ending with laughter. Then cue a steely reserve, Pam-level determination, and a second try. To be honest, the left leg does "move", but it's only a little right now. Essentially, you can see that her brain is sending the message to it. As you all know though, our family doesn't do "patience" so she would like to be running a marathon, like NOW. However, it's going to take a bit more time than 3 days. I've got pep talk storage.

Then her days end around 3:30 or 4. The three of us hang out, have dinner, she threatens to bite anyone who gets in the way of her cake...you know, usual family time.

I tried to sneak an Apple TV in yesterday so that she could see the slideshow on her TV. Dad stood on a chair and hooked it up while I watched for invaders. Unfortunately they must have prepared for such rebellious behavior because they have disabled the TV from changing inputs. "I would've gotten away with it, if it weren't for you meddling kids!" (Scooby Doo reference anyone?)

On the move.

I just watched my mom walk. I swear. She was holding onto the rail on her right side and the PT was holding her left side, but she did it! She moved her left leg and took step after step. Naturally I burst into tears. And then they told her I was watching and she burst into tears and then we both just sat there and ugly-cried at each other. And then I told everyone in the office and we all cried together. I still have a lump in my throat. I also promised her I would dance when I get there tomorrow...that won't be embarrassing AT ALL. But if that's what Pam wants, then that's what Pam gets.

After we both got ourselves under control, she requested Don Marshall's presence as she needs a haircut. I believe the phrase was "I'm gunning for him." I'm not sure whether to laugh or be scared. :)

Post Labor Day Update

I'm back from Labor Day. Not that you asked, but it was lovely. I spent 4 days with several good friends of mine who made me laugh (laugh really hard) and feel lighter than usual. For that I am thankful. I also came back with a nice glow from time in the sun. Nothing as fabulous as my mom's tan, but still...

Now, for mom. She's still kicking ass. Supposedly the "team" was to meet today and figure out a plan. We're not sure if that happened or not. My dad was planning to be a part of it and then of course conference Dee and I in since we can't not be involved, but he never heard from them. Kind of annoying and pretty disappointing because we all have lots of questions, but I'm not going to hate on the folks at RIC because as far as I can tell they're working magic on my mom. She's actually eating! All kinds of exciting things too. Muffin. Mashed potatoes. You know, all of the things she would secretly want to order off a menu, but would instead opt for a coffee or "rabbit food" (aka, salad). In fact, she ate enough yesterday that they didn't even have to supplement her nutrition with the feeding tube.

Other than that, dad says she's been working hard. Are any of us surprised? She's in some sort of therapy from 8am to 3pm with a small break. That's a full day for any of us, so you can imagine that she's pretty tired by the end of the day.

Lastly. As far as the three weeks, they've extended that date to September 21st. So another extra week...as of now. This whole thing is pretty confusing (and vague because it's insurance and doctors so are we surprised?). I'll try to explain, so bare with me. Apparently the way it works is that Blue Cross Blue Shield has to approve it by week, so every week they have to clear her to stay. And the way they determine if she "qualifies" to stay at RIC is by how much progress she is making. The more substantial progress she makes, the more likely they are to allow her to stay - essentially, the more RIC seems to help, the more they support the stay. I wish I knew anything more than that, but that's all I've got. When she does eventually leave RIC, she will either go to another place with constant nursing care OR go home and attend out patient therapy, but let's not cross that overwhelming bridge until we get to it, shall we?

Let The Countdown Begin

Three weeks folks. That's the amount of time they expect my mom to be in inpatient rehab. Who knew?? We didn't. Both my dad and I are completely surprised. I think we were both expecting a few months, but apparently they have different plans. Seeing as how neither of us have any experience in this rehab business, it's not that shocking that we didn't know this, but we had both mentally prepared for her to be there for at least a few months. The way it works is that "her team" sets a goal and each week they reassess if the release date will be reachable. I know there a ton of questions, none of which I can answer right now. For instance, who is this "team"? Why three weeks? How do they KNOW she's ready to leave inpatient? My dad will meet the team on Tuesday and hopefully learn a whole lot more, but until then "three weeks" is all I know.

As far as "how she's doing," she's been working hard with all the different rehab specialists. Speech, OT, PT, psychologist etc. She sat up on the side of the bed today and didn't need any assistance to stay there, which is a huge step.

Today she also got to finally take off that less than flattering gown and put on normal clothes. No saying what the outfit looks like as my dad and Rick were responsible for the ensemble. I have to believe it's better than the business in the front, party in the back look that she's been forced to rock for the last month and a half.

OH, I also know that they took her trach out! The doctor just came in, announced the trach was coming out and after Rick excused himself so that he didn't faint, they just popped it right out. Clearly, they're feeling pretty good about her breathing. Now we just need to get her eating. Maybe we can finally get her some damn ice cream since they've been promising it to her for a while. I think she deserves it, don't you? And none of that fat free crap, I'm talking about the real deal.

Hello RIC!

It's official. She is now a resident of RIC. Rick was disappointed that they didn't sound the siren on their way - he felt that at the very least they should roll down the window so Pam could make the siren noise for herself. No dice.

Anyhow. My dad feels really good about the place. He said that she has a great room facing northwest. He said it was sunny and happy and everyone he met was warm and friendly. When he got there he asked where the paperwork was that he needed to sign for consent, but apparently my mom had beat him to it. As you know, she doesn't need anyone's consent. If she wants to do something, she'll do it.

My dad will meet her team soon and they will discuss the plan of attack. I have a good feeling about this folks.

Where's The Ice Cream

Hi friends.

I know it's been two whole days. Have you missed me? I'm sure. The truth is there isn't that much to report. She's talking a lot. She actually explained to the speech therapist (formerly known as The Gestapo, but now just called Kristen) how she and my dad met each other. Unbeknownst to my father, she took her through the whole adorable/embarrassing story. When my dad came back in the room and Kristen was looking at him with slightly googly eyes, he said, "You told her that story?" To which my mom replied, "She asked. what was I SUPPOSED to say?"

Her blood pressure is great, her temp is normal and the only thing that might be an issue is blood sugar, but it's nothing to write home about. She is also participating in her PT and OT - working really hard and doing great. They're still trying to get her left side moving. Everyone swears that they've seen her move her left arm, but let me tell you something about sitting in a hospital for weeks, you start to see things. I kid. I believe that they saw it. We're just hoping that it will become a more common occurrence. I did some light reading about RIC and it looks like they are the masters of rehab, so I have high hopes for her left side once she gets there.

Lastly, she continues to talk about ice cream. She just really wants the damn ice cream. Turns out Holy Family doesn't even have ice cream. My mom finds it unreasonable that ANY hospital be without ice cream. I agree.

The Magic Day Is Tuesday

Tuesday is the day. Approximately 4 days from now she will be making the trek from the beautiful western suburbs to the more cosmopolitan environment of downtown Chicago. She's aware of the move. When asked where she was going next week, she answered "RIC" and when asked if she knew what it stood for she responded "Rehabilitation Institution of Chicago" in her sassiest voice. 

The troops on the frontlines report that she had a good day today. She was very alert and aware. She pulled out all the stops for the occupational therapist - she matches stars with stars and circles with circles. She STILL has the trach, but it's capped - meaning she's breathing completely on her own and keeping up her oxygen levels, so it's only there because of the swallowing issue. Most likely they'll keep it until she moves to RIC where she'll get more extensive therapy and therefore be able to focus more on getting rid of the trach. 

Let the countdown begin. 

Pam Is Going To Rehab!

Not THAT rehab.

That's right folks. It's happening. Dr. A and the case manager decided that she's ready. She's still having a little bit of trouble swallowing and she's still slightly confused, but neither of those things seem to be a very big concern. They feel like she'll sort both of those things out.

So where to next? RIC (Rehabilitation Institute of Chicago), ranked #1 since 1991! Only the BEST for Pam. Obviously. We're not sure when she'll make the epic journey though, because as usual we have to wait for insurance and we all know how that goes. Anybody want to place a bet? The collective guess so far is late next week. According to Dr. A. and team, once she's at RIC she'll get much better rehabilitation care than she's currently getting (which makes sense as that's their focus), so I expect her to be roller skating in a month.

When she gets to rehab, it will be a lot of work, but what I know about my mom is that she sure as shit isn't scared of hard work.

I'm already thinking about the decor.

Go Pam Go.

A Glass of Lake Michigan

So if we continue my desert analogy (or is it a metaphor? or is it a simile? I think it's analogy and if it's not just go with it)... If we were on our desert drive, today would be one of those days when spotting roadkill seems exciting. It's been a slow one.

I can tell you that she's definitely found her voice. She talks a lot about a lot. Sometimes it's just small talk about my summer plans and then sometimes it's a conversation about Polish cuisine. You know. Just normal everyday conversation? And if she's not keeping us abreast of her knowledge of international cuisine, she's making sure to crack jokes at various audience member's expense. She also has a new manicure. She is now rocking "quartz" by Chanel. And owning it. Natch.

The piece that I haven't shared with you because it may be slightly concerning is that she's still a bit confused. She knows she was/is a school psychologist, she knows who has had babies recently, she knows how long she's been married, but for some reason she's convinced she lives in Cincinnati. She's mentioned it several times. Of course there are a bundle of half-baked theories as to why. Shocking. Things like she's been in the hospital a while, or perhaps it's her medication, or frankly it's just a crossed wire at the moment. Basically no one knows, but also no one seems all that concerned. I mean, we are, but that's because we're a bunch of overly-anxious and possibly over-caffeinated family members.

Lastly, her swallowing isn't up to snuff yet and she's pissed because she wants water. I believe "there's a whole damn lake out there and I can't have any water" is how she explained her frustration to Dee. They're going to test again on Friday or Monday by taking an xray and hopefully after that she can have a lake-sponsored glass of water.

Like Driving Through A Desert

It occurred to me that I've been slacking on this. It hasn't been intentional. Being in New York has been a little tough. Scratch that. Let's not sugar coat. It's been HUGELY tough. Not because I don't have amazing friends supporting me. Not because my husband hasn't lived up to every single expectation I put on him the day we got married. Not because my work hasn't been absolutely hands-down the most understanding and comforting environment. And not because New York isn't a circus of distractions. But because I'm not there. I'm away from her, unable to stare at her, hear her, smell her, touch her. Instead I sit here feeling torn in two directions - the little kid who just wants her mom and the adult who needs to try and live her life because being a kid isn't an option anymore. And that battle leads to an empty space filled with an all too powerful imagination. But I started this blog to be your eyes and ears and that's what I'm going to do for you.

So.

She continues to get better a millimeter at a time. Progress feels slower without as many tangible milestones. It's like driving through the desert - you keep driving and driving, but you feel like you're getting nowhere. Oh look, MORE SAND. Are we there yet? They did another swallow test today and this time there was even less blue fluid. Huzzah! I know we're working toward "no fluid", but I don't know what happens once she passes this test. Does she eat? Does she get the trach out? Does she simply get a "I didn't aspirate blue fluid today and all I got was this shitty t-shirt" t-shirt? No idea. I do know that it's another large step toward rehab, so it's good. I can also report that she passed her cognitive test. Questions like "does New Years Day come before or after New Years Eve?" She missed one. And as she is a chronic over-achiever, I imagine that she has a millions reasons why her answer was in fact right and the doctor is just an idiot.

Lastly, the most exciting piece to me is that her sense of humor is as strong as ever. Feisty. Snarky. And sharp as a tack. No one is safe.

Not Dee...
Dee: "Pam, can you move you're left arm?" Mom: "And why would I want to do THAT?"

Not Dad...
Dad: "I'm so happy to see you, Pam." Mom: "Wait until you see the other Pam."

Not even Don Draper...
Me: "We had to fix Draper or else the adoption organization would take him back"
Mom: "Draper tries to get fixed every season. Doesn't stick."

And when I egged her on to say a rather inflammatory swear word, she responded with "Not in HOLY FAMILY Barrie" and then cackled. Touché.

Just This

All is well. She's still kicking ass. I love her.

...Try, Try Again

A swallow test is done by feeding her a very exciting applesauce and water mixture with a bit of blue dye in it. After she eats it, they suction her lungs to see if there's any blue dye. In her case there was a bit, which means that her epiglottis isn't in full form quite yet. For those of you who don't know what the epiglottis is, it's the little thing that basically acts as a lid to your trachea so that nothing goes into your lungs that isn't supposed to. They're going to test again next week. Once that epiglottis gets itself together she'll be able to start on fluids!

She also has her trach capped. She's breathing through her mouth and nose and her 02 levels are good which means that she's doing a great job breathing on her own.

I would say that unfortunately that's all the news I have, but I think most of the time in this case it's the "no news is good news" kind of thing.

I hope you're all having a good weekend.

Meet The Gestapo

I went to the beach yesterday for a work outing. I know, sounds rough. That's my excuse for not writing. The truth is though that it was a little rough. Sitting on the beach, staring at the water and listening to the waves is a quintessential Pam moment. It's one of her all time favorite things. I just kept thinking I was going to look to my left or to my right and see her reclined in a beach chair, diet coke in hand, reading an overly complex book. Soon though. Anyhow, it wasn't terrible and I don't mean to be a sadsack, it was just a moment that made me think of her so I'm sharing it.

Moving on.

The new trach is clearly a winner. She's been talking a good amount and her voice is getting stronger. The speech therapist (who Rick has nicknamed "The Gestapo", which I believe is reflective of how seriously she takes her job, but both he and Dee have stressed how much they really like her, so I don't want you guys to fear the speech therapist)... anyhow, she explained that my mom has to work on taking breaths and pausing between every few words and sentences - otherwise she talks too quickly and runs out of steam. We end up hearing the beginning and not the end. It's like a balloon deflating itself very quickly. So they've been working on it and it's been a big help. But the BEST news is that she's laughing. I've watched and listened as she's bantered back and forth with my "charming" husband, because let's be honest, there's nothing like a Southerner to really get her worked up. No offense Southerners, it's all in good fun. The unfortunate news is that she hasn't had her ice cream yet because The Gestapo wants to wait a bit longer. And what The Gestapo wants, The Gestapo gets.

The last piece of exciting news is that they've started talking about rehab. They feel as though she will probably be able to move in the next few weeks. We don't want to get ahead of ourselves obviously, but to me that shows me that the people who know what they're doing feel encouraged by her progress.

Um, I just got a text message of Dee and my mom giving me the middle finger. SHE'S BACK!

With A Whisper

She has her new trach! Dr. A decided to get involved and tell the ENT how she felt about my mom not having the new trach. I feel as though she and my mom may have a few things in common. But thanks to Dr. A, mom can now whisper. So far she has said her name, my dad's name and Dee's name. We also know that she is able to express her feelings "pretty well" after she told Dee how she felt about her moving her head. No. It's any of the words you're thinking. It was simply "stop". Get your mind out of the gutter people. Anyhow, some of you may find it surprising, but talking takes a lot of energy, so it will be a little while before she'll be making phone calls. But it's a big step in the right direction.

The other exciting news is that Dr. A has decided to start testing her ability to eat. On the menu: coffee, yogurt and ice cream. I mean, I could do without the yogurt, but coffee and ice cream sound like a pretty sweet line up to me. I feel fairly certain my mom agrees. I have no idea when it's going to happen. I know that's what you're probably wondering. The thing I DO know is that you NEVER know when things will happen in a hospital. I feel like if you are given a time or date it's for the sake of everyone's sanity. For them, it means they can stop being asked. For you (us) it's so we can pretend we know what's going on. I can't blame them. We've all had a conversation with a relentless 5 year old. You know what I mean. The conversation in which the 5 years old asks you the same question over and over and over again until you just make something up to satisfy them. (PS, I don't endorse lying, unless it's to stop answering awkward questions from a 5 year old). I imagine it's a similar experience for anyone who works in medicine.

That's the news I have for now.

Read My Lips...

At least 3 times a day I think to call my mom. At least. And of course for no specific reason. Most of the time it's because I'm walking from A to B - home to subway, subway to work, work to subway, Draper pee spot 1 to Draper pee spot 2. And then most of the time she would be between her different spots too. Home to nails, dinner to Shakespeare in the park, garden store to home, Puck pee spot 1 to the middle of the street because the dog has no brain. There are also other times when I just feel the need to call her because I'm a little bit lost and I know she's the person who can help me. All of this to say, I'm sorry I didn't write yesterday, I felt a little bit lost.

My mom continues to get a little bit better day by day. They still haven't switched her trach. The ENT is pretty fixated on the "secretions" and promises that it's better to be cautious rather than making the switch and then having to reverse it. I totally know that he's right, but at the same time, I also know that my mom wants to talk and as soon as she gets that new trach she's going to express her "love" for the ENT. She continues to mouth words and everyone continues to try to read her lips. I imagine it as an Abbott and Costello "Who's on First" skit. The most exciting piece is that she's writing. She's written a few things including her own phone number, so we know her memory is there and we know she's still got her beautiful handwriting. I believe the plan is to give her a whiteboard so that it's easier for her to write. I'm expecting "I want to kill the ENT" in red marker any day now.

If at first you don't succeed, order more chardonnay

I wish I could share a new trick with you, but my spies have given me nothing.

I did get to FaceTime again with my mom today. She winked at me...or maybe it was at DM. It was probably at DM. I told her some story about the overly expensive Brooklyn design shop that is selling overly expensive things that she actually told me to do 3 years ago. Not surprising at all. I mean, the woman had the genius idea to paint our kitchen raspberry pink. Most of you are questioning that idea this very second. But trust me, it's amazing. DM even likes it (I think). She and I also decided to paint my (+ DM's) bedroom a lovely slate grey. I remember half way through when we both looked up and decided it looked like the Union's Civil War Uniform. Keep in mind we'd already done the entire living room as well as had the couch destroyed and removed. And that's when we looked each other, said something along the lines of "oh shit", ordered more chardonnay, gave Restoration Hardware a call, got the right paint and started over.

Now it's the perfect grey.

Never give up. Lesson learned.

Friday Performance

FaceTime commercials no longer feel cheesy. That's all I'll say about that.

First, the basics. She still has the trach and is still mouthing words. Is also still determined to remove the trach herself which I'm sure she will continue to do until next Wednesday - that's the day the ENT is hoping will be "replace the trach" day. She's still doing Pam-code, which has yet to be decrypted.

Meanwhile, as some of you may have gathered, she smiled last night. Let me set the scene for you. Of course, I'm taking creative license here since I clearly didn't participate, but I've been given descriptions and I'm the one writing so...

Scene: a beautifully decorated hospital room. Envision the large fuschia and polka dotted poofs, newly added butterflies, a smattering of cards full of well wishes and of course the Go Pam Go sign are all offset by the lovely faded sea foam green walls and dirty dishwater grey linoleum floor.

Cast:
Debbie......fairy godmother A
Wendy.......fairy godmother B
Sharon......fairy godmother C
Dee.........Aunt/sister and fairy godmother D (see what I did there? D for Dee. Genius)
Mom.........hero, legend, ass-kicker and spirit animal

Wendy: "Let's play some music."

(the characters look at each other, each gives the normal shoulder shrugs, nods of approval etc, Dee of course cringes a little as music is not necessarily "her thing", but abides as this is for her sister for whom she would do anything. EVEN LISTEN TO MUSIC.)

Suddenly the dim of the florescent lights and the slightly arhythmic beeps of the machine are drowned out by a glorious blast of the Lion King soundtrack. Why? I don't know, just go with it. The music begins to play and the characters feel something move deep within their souls. Gloria Estefan was right, the rhythm IS gonna get you. And it did. They begin to dance. Soon all four characters (grown a$$ women) were swaying to and fro to some serious Disney beats. I know the Broadway Show has NOTHING on this performance.

Are you smiling yet? Because Pam was.

Anybody speak "Pam"?

She still isn't making any noise. She can mouth things, but she can't speak them. A silent Pam. Who knew there was such a thing? I kid, I kid. It's NOT FUNNY, but we all know that the idea of my mom not being the strongest voice in the conversation is unheard of. Not loudest. Strongest. And I love that about her. She is convinced she's an introvert - no really. Yet she always walks into a room and slowly but surely works her magic and charm unknowingly - she makes everyone feel loved, important, and the center of attention. And to her, you really are. It's no act.

SO, the thought of my mom NOT having a voice is something I never thought I would see. She's still managed to do a lot of very impressive things though. Brushing her teeth, putting on chapstick, doing her usual tricks. Apparently she has a secret language of sorts. Tapping two fingers to her thumb and making a circle with her pointer finger. A Pam morse code of sorts. No one has cracked the code quite yet, I'm sure she thinks we're all slow.

I know you're all wondering, "why can't she talk?" The ENT explained that it's because her vocal cords are still swollen - most likely from the endotrachial tube. They still need to give her a different trach tube, but right now there's too many secretions (I don't know why that matters folks, but Mr. Ears Nose and Throat guy says it does, so it does and I just don't argue when it comes to the subject of gross things). He will check again the middle of next week and hopefully he can make some magic happen. Until then, we've got some decoding to do.

Thursday Magic

Three weeks ago last Tuesday my mom suffered a serious stroke. The kind of serious that shook every single one of us to the core. The kind of serious that you don't know if she'll survive. But she's Pam, so she did. And today via Facetime, she looked straight into an iphone screen with both eyes open and mouthed that she loved me. I stood outside on an annoyingly loud Brooklyn street, cursing the stupid cars that felt the need to pointlessly vent frustration with a honking horn and then realized it made no difference if I could hear her. I could see her. I could see her lips moving. And there's no mistaking what it looks like when my mom tells me she loves me... over and over again. Thank you Judy (another fairy godmother) and THANK YOU MOM.

The specifics: ENT visited today, they think her trach is too big or the there's too much swelling which is why she can't use her voice yet. So they're working on it. More caffeine-like stuff to wake her up a bit more and make her a bit more active. The CT scan shows she's still making progress. The neurologist is not concerned and thinks her progress if fine. The nurse today was from the Evanston hospital ICU and was amazing. All in all things are great.

And many of you have commented on my strength and thanked me for keeping you up to date. I can't and won't take credit for my strength. It comes from my parents. They've made me who I am and obviously (and thankfully) continue to do so.

Keep the karma coming.

Just Wednesday

I don't have a ton to report to you. I know that she's still doing better than the day before, which is what we want. I also know that today when Debbie (Debbie Norton, for those who are not familiar, has known my mom since they were teenagers and has been one of my fairy god mothers since I was born)... anyhow, Debbie asked my mom if she wanted to hear my voice and she gave a thumbs up, so obviously I called. I then babbled to her about the meaningless things going on with me and told her how much I loved her. When they asked her if she heard me, she gave a thumbs up. I have never been more relieved in my life. She hears me. She hears us. She's there.

My dad, Dee and Debbie all met her doctor tonight. My dad told me approximately three times how much he likes this doctor and the sense of trust and elation in his voice made me feel thankful. He reported that the doctor "felt positive" about the way things are going - in my brief, but intense experience with doctors that translates to "things are good, but I don't want to get you excited in case something freakish happens". I know that feeling. It's scary to get hopes up. It's scary to believe that things will ever be as they were. They won't be. But when a doctor says "positive" to me, I think "HELL YES!!!" It means potential. I will never take the past or present for granted, but I'm surely going to make the future count.

Goodnight.

She ALMOST Speaks!

She's stirring! I hate that I'm missing it, but Dee is humoring me by answering my calls every three hours. They've decided to give her Provigil - what's that? Well, if you follow this link you can read about it. But essentially it's a caffeine-like substance. It's used to help narcoleptics. I can't believe my mom actually has to be caffeinated. The same woman who took TWO Ambien and STILL managed to take a walking tour of Edinburgh during a layover, has to be caffeinated. Why did she take two? Well because the one did nothing of course. I have no idea where I got my lack of patience. None. At. All. Don't worry, during her walking tour she made sure to always walk with another pedestrian when crossing the street - I'm sure that didn't creep people out AT ALL. A strange glassy-eyed American, probably unable to form full sentences, standing a little too close and casually following them across a street. One of my favorite stories of all time. I'm actually giggling at my computer. ANYHOW. Naturally it took a little while for the Provigil to effect her, meaning it took more than an hour. Again, we aren't the patient type. But according to several witnesses she's much more alert and keeping her eyes open for hours at a time.

The other exciting news is that she is beginning to mouth words. She was able to mouth that Dee was her sister and she also mouthed the new doctor's name. Sorry I can't give you a verbal character sketch, haven't met her. Before she can voice her opinion about all of this, they have to give her a different trach. Once that happens, she'll be able to speak. We're all on the edge of our seats wondering what her first words will be. Any bets?

Middle Finger Monday

First day back and it's harder than I thought. I've already been into some rosé. I've had an expensive lunch (thanks to my more-than-amazing co-workers) and now I'm sitting here blogging.

My trip home was yet another message from the universe. I gave mom a kiss, stifled some tears and walked down the hallway. First dad and I were stopped by a freight train. Next we came to a toll booth that only took coins. Dad doesn't carry change because coins in his pockets are one of his many annoyances. So, I pieced together all the change I could, which amounted to (I swear) $1.49. I had EXACTLY 14 pennies. There wasn't a single freaking penny anywhere. Not in the nooks and not in the crannies. The toll was $1.50. But when dad says "F#@k it" you embrace that rare moment and you do. Dad, you still have 6 days to pay that extra cent. Dare you live on the edge? Next, I showed up to the airport, went to sign in and low and behold I still had mom's phone. Made it through security. Made it to the gate. The screen said "Boston" and there was no attendant to assign me a seat. Finally got my seat 10 minutes before the flight, but all in all I'm pretty sure my mom was making a statement.

I woke up this morning to Draper in my face and it was lovely. But then it hit me. We're separated. And that's when I called Dee and because she is the amazing sister that she is, she was already staring at her. Dee has put her on a schedule - every 30 minutes she wakes her up and makes her do her tricks. And every 30 minutes she does them. "Pam, can you show me two fingers?" Pam gave her the middle finger and with that my heart is elated.

Happy Monday folks.

From Drab to Fab!

I know I promised the reveal. We'll get to that. But first, more importantly, she washed her face! I missed it, but the report is that she was handed a washcloth and she went straight to her face to clean it. Not only I'm a glad to see her sense of hygiene is still intact, but I'm also completely impressed. They said we should keep her restraint off as much as possible so she can continue to keep us in awe… Of course, this has to be under super-vision as we all know how she feels about the trach. She ALSO got some sweet new kicks. Technically they're for foot drop, we need to make sure her beautiful ankles are supported, but these boots look like souped up Uggs. I mean, these things look like she ready to go kick some ass with Eskimos. (Ignore the toenails. Those are today's project.)

Now to the makeover.

I figured putting things in her line of sight was key. So everything is hanging higher up. If it were up to me, I would get rid of all of the unsightly medical crud and the less than attractive hazard waste containers and paint the walls a nice dove grey, but clearly that's not happening no matter how Pam I get on anyone. The design challenge here is that you can't plug anything in, you can't use things that people might be allergic to and you can't put anything anywhere that could get in the nurses way. So with a little tissue paper, some patience, and help from some taller friends, we've got a poofed ceiling!

Want a closer look? Ok.

If she looks to her left, she will see her cards lining the beautiful faux mahogany cabinets and with a little construction paper she's got her slogan. GO PAM GO. To her right she'll see the bathroom. I'll spare you. And then when she looks directly in front of her she's got her flat screen TV that will soon play a slideshow of pictures (once I get back to NY and figure out how to make that happen). Don't worry. I'm sure there's a way. If you can rent dogs, then surely somewhere in NY one can burn a DVD.

One final note. As I mentioned, I'm leaving tonight. To say it's difficult is an understatement. I feel nervous. I feel sad. I feel guilty. I feel scared. I don't know what the right words are… I know she's going to be completely taken care of. I know there are plenty of people here to make sure she's happy, healthy and kicking ass. But as I'm sure you've all experienced, not knowing what is happening minute by minute is hard. I want to be here when she opens her eyes. I want to be here when she says her first word. And mostly I want to be here because I know she wants me to be here. I also know that she would tell me to go back to work. Live my life. Take care of myself, she'll be fine. It's the same thing she says every time we separate. However, she is the person who literally gave me life and 19 days ago I realized that she still gives me life. My life is mom-sponsored. I'm fueled by her. Without her I feel less than.

But enough with the sadness. She is killing it and will continue to. And in the meantime, I will go back to NY, my mom-decorated apartment, my adorable husband and adorable dog, my friends, my coffee shop and my job. I promise to try to keep up with the blog as best as possible. I will tell you everything I know (and everything Dee and dad tell me) as often as I can.

PS. We've already gotten compliments on the decor. I know mom is loving it.

One Little Note

The room has been decorated, but I'm going to wait to share the exciting reveal for tomorrow. I know it's going to keep you up tonight. I just wanted to tell you all that I'm going to be compiling pictures on a dvd so she can watch a slide show on her TV in her room. SO, you can just share with me via email if that is easier. bhleimer@gmail.com

New Corner Digs

We're getting settled here at Holy Family. Room 324. She's got a corner and it's big! The room is usually used for bariatric patients, but luckily it's not needed by anyone at the moment. Of course, if someone does need it, we'll have to move. Until then, we're living large (pun intended?).

We've met a few people so far. The staff changes every day pretty much, so I don't think we'll have the same bond that we had in the ICU. We just met Dennis, the physical therapist. Nice guy. Seems patient, considerate and someone who will find my mom hilarious. So I'm a fan. He listened to me patiently while I suffered a case of word vomit. I told him how amazing my mom is. I told him she's got to be ready to travel the world. I mentioned that sunset is her time to shine. He said he would keep all of that under consideration. I also gave him all the deets on her tricks and then of course she did NONE of them. Thanks mom.

We've also met Janet and Hannah (the night nurse/nurse tech duo last night) who told us that this same thing happened to a few patients they had and each of them kick ass now. And then there was Herman, the X-ray guy who has a great 80's mullet and was super friendly. His wife is a physical therapist, so he showed us some moves. Between us, Herman and Dennis, we're going to make damn sure mom's joints don't get stiff.

Lastly, as you know, I'm on a mission to bring some joy to this room. You know how my mom and I like nothing more than crafting. Needless to say, I've got some plans. Thankfully Dee is my trusty side-kick in this venture and has supported my vision…by running multiple errands with me. That's love people. We've been to Perennials (shout out to the O's and their awesome store, you should all check it out), we've been to Target (such a suburban heaven) and we've been to Home Depot (meh). I've got some work to do today. In the meantime, I have a small ask of all of you. Many of you have sent cards (which is awesome), but if more of you want to send cards, or pictures or signs I would love to have her surrounded by loving words and familiar faces. Send them to my parent's house and they'll make it to the room. (Princess Pam, 1580 Sherman Ave, #902, Evanston, IL 60201).

It's Holy Family Friday!

It's showtime! She's making the journey to Holy Family today. She may not look that excited but I know she's thrilled on the inside. Right now she's sitting in her chair, taking a nap. Mr. I Saved Her Life says she's doing really well and the neuro folks are feeling good. Her private ride is picking her up at 2. There is a whole bunch of paper work and assessing from all angles involved in the process, so they said we shouldn't really expect her to be settled into her new palace until 4 or so. Then we will get a look at our canvas and see what we're working with when it comes to the decor. My first impulse is Christmas lights, but I've been told that's a no-no. Looks like this is going to be a challenge. Don't worry. I'm up to it.

In other news medical over-achiever news, my dad passed his stress test with flying colors. And he didn't even study. Of course they want him to exercise more, but the dentist would also like us to floss more. We all try our best, but nobody's perfect. Some of us are almost perfect though, AHEM. Anyway, he's still a patient until they give him the official gold star, but hopefully he'll be joining us soon.

We said goodbye to Mary Ann and Ray yesterday, but let them know that they're stuck with us and we will definitely be visiting so they can really get to meet this legend that is my mom.

Let the next chapter commence. Stay tuned.

It's a family affair

I can't make this shit up folks. I just can't. I'm semi-creative and have a fairly sizable sense of humor, but nothing that can compete with this. My father is now a NorthShore Evanston Hospital resident. Before you panic. HE'S FINE. I repeat. HE'S PERFECTLY FINE. Happy. Healthy. FINE.

This is the story. He came in early this morning, as he does. He's the early bird. He left around 9:30 or so when Dee got there so he could go home and do some work. I showed up shortly after he left and she and I sat around reading and playing with mom. You know. As we do. Around noon, it was nourishment time, so we decided we would make our way down to the always-exciting hospital cafeteria. Mmmmm. We ran into my dad at the elevator where he looked at us and confessed "I don't feel so great". We both looked at him with the "'OK'-give-him-a-pat-on-the-head" look as well as the "you gotta be kidding me right now?" look. Apparently his head felt fuzzy, he had a headache, his arms were hurting and his breathing was fast. I recommended that we go eat something and take a little break. Which we did. It didn't get better. He was genuinely concerned and feeling less-than-Stanley. Dee took him to the ER, I went back to Pam-patrol.

The ER stay reported that he had a good EKG (thank goodness), good heart rate (thank goodness), good cardiac enzymes(thank goodness? not sure what those are, but seems good), but they were still concerned and therefore asked his physician what he thought. He felt it best that dad stay in the hospital for the night for observation and get a stress test in the morning. Stress? Can't imagine why. So dad sits/hopefully sleeps in room 4129. When we left him, he was doing well, but clearly he needs some rest.

Mom is doing well. Performing all of her tricks, fever is low-grade, lung "stuff" looks good and kicking her leg around. We're still waiting for insurance, but we're getting moved to the stroke unit tomorrow to get her out of virus-alley.

And with that, I'm signing off for the day. Both of my parents are stable. Thursday is not slow after all.

It's a slow Thursday

Still here. Haven't heard from insurance yet.

She's been sitting in her chair most of the morning. According to the night nurse she was up all night, which is totally mom. The woman never sleeps. If we were home, the Ben & Jerry's would be sitting on the counter from her nocturnal wanderings. Needless to say, she's pretty sleepy today. Kicking her right leg around, ripping the sheet off whenever she gets a chance and feeling her scar every once in a while. Temp is 99.7, lung stuff keeps looking better and better and no one seems to be concerned about her latest CT scan.

On another note, we've started letting her loose when she pulls on the restraint - might as well just see, right? Turns out all of those times my mom was fighting with the restraint, she apparently just wanted to scratch her nose, or her face, or the serpentine scar that now covers her head. Of course 1 in 5 times she does goes straight for the trach tube, so I kind of think it's one master plan. Always plotting.

Here I sit. Wondering when we're getting booted from the ICU. Looking at my mom. Waiting for her to open her eyes, sit up and say "let's get the hell out of here". I know you are too.

I've never decorated a hospital room, but I imagine my process will be documented TLC style.

Pam is leaving the building…soon….we think

Hi folks. I know it's 8pm, so I'm throwing you all off schedule, but I figured you'd want to know.

She's still in ICU because insurance hasn't given clearance yet. Oh insurance, never in a hurry. We've cleared out all of our stuff, taken our CD's, emptied the closet of all wine and wine accoutrements. The party is over. When we left her tonight, she was breathing happily on her own, ball in hand with the blinds open to another beautiful sunset. Some of you have asked why she can't just stay at the hospital. Trust me, we're asking the same. No matter how much they love us there (or say they love us), the answer is that she's "too healthy" but not quite ready for rehab. So we're in purgatory stage. We don't know when (or if) we're going to Holy Family tomorrow, but I would bet we'll be heading that way in the afternoon.

It's going to be hard to wave goodbye to Disney World, but as I'm my mother's daughter I have big plans to spruce up her next room. When Pam's eyes open she will see magic, not a pee-yellow hospital wall.

Don't fret, I'll continue to blog. I would never dare leave you all on the edge of your seats. Many of you have asked what you can do to help. Here's the thing. I think this next couple of weeks will be harder than these first two because our adrenaline is gone and we're sure as shit not in Kansas anymore (sorry Ms. Garland). We're tired. Mom's tired. And she's about to be super frustrated. That might be an understatement. No, that's definitely an understatement. The kracken is about to be awoken.

The encouragement, the support, the love - we will need it now more than ever.

Pam is leaving the building

Well, Pam is making her exit. We thought we'd get a little more warning, but apparently they're big on surprises around here? They've pin pointed the infection (ecoli in the lungs), temp is 99.3, she hasn't been on the ventilator since yesterday morning and she's still biting. All in all, she's stable. That doesn't mean she's up and walking around. She's still got her eyes closed, but her right leg seems to be hell bent on getting out of bed. I know, we all thought if she was off of the vent she wouldn't have to go into acute care, but it seems that was not correct. We need her to be able to participate in therapy for 3 hours before she gets to go to rehab. Until then, it's acute care. We THINK it's happening this afternoon, but we need the pre-approval from the insurance before we can move into Holy Family. I want to complain about how slowly insurance moves, but in this case they can take their time. I'm not all that excited about leaving the womb. We've been completely spoiled by this ICU. This place is big, it's clean, and jam packed with people who are incredibly vigilant and entirely trustworthy. Holy Family is an unknown, which right now seems scary. They've got a lot to prove to me.

The saddest part about potentially leaving today is we won't get to say goodbye to Maryanne and Ray. It's their day off. Those two have been absolute gems. They've made us feel comfortable and safe during two weeks that have tested all of us. Dr. Farhat stopped by as well. Not only is he Mr. I Saved Her Life, he is also Mr. Positivity - he feels very good about her left leg and thinks she'll be able to use it.

We don't know when we're leaving - insurance could have us out of her tonight as late as 7pm or any time tomorrow. We also don't know how long she'll be a Holy Family resident. It could be days, weeks or months. It just depends how fast she kicks ass.

Project Ventilator

We visited Holy Family yesterday - the acute care facility. The one everyone recommends. It seems to me that an acute care facility should be a place that inspires people to get better, in which case our nation's could use a little love. There is plenty more that I could say about it, but this blog isn't about me, it's about my mom and her fight. It's considered "the best," so that's where she'll go if she has to, but let's just say that we'd REALLY like her to get the hell off of the ventilator and bypass the whole freaking thing.

Because of the rather "strong" reaction I had to the visit, Dee and my dad were fairly adamant to Maryanne and Ray that we MUST get her off this ventilator. I was adamant as well, but I had to excuse myself from the hospital before I went Pam on everyone. So. Today she is breathing on her own, no ventilator, but some extra oxygen. Sitting in a chair… more like a lazy boy, but NOT a hospital bed. They also took the stitches out and everyone is amazed at how quickly her hair seems to be growing back. My mom always complains about how much hair she has, but I think we can all agree it's a moment to be thankful for that beautiful mane. Intestines are awake and working like gangbusters, temperature is at a low-grade fever level and the "stuff" in the lungs is starting to look better thanks to the Mr. Infectious Disease and his antibiotics. You know you've been here a while when you start to get excited with the respiratory folks about the color of the lung stuff. They think it's ventilator induced pneumonia. White blood cell count is down since yesterday. Mr. Infectious Disease (Dr. Schrantz - a younger high school science teacher type) admitted that this is a case of "art and science" and in this case we're on the art side of things.

She's pretty sleepy today. Not doing any tricks no matter how hard all of us try.

I'm sorry I can't be more fun today. I'm thoroughly exhausted. Luckily my mom is a stronger woman than I.

Diana Ross Monday

They just took some blood to check her procalcitonin levels. Not something I'm familiar with, so you can bet your ass both me and Dee have googled it and tried to make sense of it. It's yet another way to check for infection. The more I read, the more I didn't want to read anymore. Now is not the time to go crazy on WebMD. It's a slippery slope. I would probably end up diagnosing my mom with ebola. So, how serious is it? Don't know. What exactly is it for? Don't know. Met another Mr. Infectious Disease guy, Dr. Semel, he reminds me of a high school science teacher. Super nice and answers my questions, although I don't really know what questions to ask yet. The cultures still haven't showed anything, which means they still don't know where or if there is an infection. All in all, SUPER frustrating. Is it possible there isn't an infection? According to the other friendly Infectious Disease guy, yes, it's possible. But until they can rule out all possibilities and she stops getting a fever they're going to keep looking. I think that's a good plan, don't you?

On another note, the next step from ICU is longterm acute care. I know that "longterm" sounds scary and dooming, but it's really only a couple of weeks. It's the pre-rehab step. It will get her out of the ICU where infections lurk around every corner and into a place that will watch her just as closely and help get her rehab ready. Of course we would love for her to be able to just go straight to rehab, but she has to get off the ventilator and gain some strength. We're doing a tour of Holy Family this afternoon at 3:30. It's the one that everyone has recommended across the board, so obviously that's the one we want her to go to. It's in Des Plaines. Story: When we moved here both my mom and I pronounced it as though it were a fancy french locale - "Deh Plain". It wasn't long before one of us said it to a Chicagoan who looked at us confused and said "you mean Des Plaines?". It's phonetic. Rolls right off the tongue. I will never get over that. She'll be thrilled to be a Des Plainian.

I'm sure you're wondering when she'll be going to acute care, but we don't know that yet. We want her out of here sooner rather than later to avoid her catching anything in the ICU, but we just need her to kick this temperature.

Otherwise, white blood count is down from yesterday, but still higher than Mr. Infectious Disease likes. Waiting for the GI's to tell us if she can have some snacks. Her lung "stuff" is still there, but is a better color than yesterday. This is the kind of stuff that you get excited about in the ICU. And Maryanne is back! Disney princess + Mary Poppins. She actually said that she has thought about working more days just so she can be our nurse. I love her and told her she's stuck with us now. Before we get out of here she's giving us her contact info so we keep her in the loop.

We're all listening to Diana Ross, my mom was tapping my hand to the beat and gave my nose a squeeze. A strong squeeze at that.

Is it weird that I find comfort in the ICU now? It's like my safe zone. Everything outside of here reminds me that's there's a life my mom doesn't get to see with me every day. Soon though. Just kicking ass and taking names.

Cranberries? Raspberries? Meh.

White blood cell count is down from yesterday, but still elevated. According to the samples they sent yesterday there's been no growth. But then Lauren (another one of our personal favorite day nurses who talks to us like we're people with above average IQs…which we ARE, I can hear your snarky remarks our there)… ANYWAY, Lauren was/is slightly concerned about some "stuff" Ray found in her lungs during suctioning. Remember Ray? He's the great respiratory guy who is also the head-shave helper. But the cultures don't show anything. Yet another mystery. Her temp seems to be OK today, but again, it just goes up and down willy nilly which is apparently very common with neuro patients. Essentially her brain is a bit of a faulty thermostat. I wish I could take credit for that analogy, but the credit must go to Josephine - you've heard about her before, she was the one who clued us in on the need for a head shave. That doesn't mean that the fever isn't a symptom of infection though. The GI's (gastroenterologists, not little green men, although I'd prefer that) came back, listened to her bowels and told us the intestines are still on break. So Pam is still off the snacks - at least until tomorrow.

Side note, Ray checked mom's trach tube and asked which thoracic and cardiac surgeon was responsible for the fine piece of work. We told him it was Dr. Howington and Ray's eyes widened as he said "he's the best". I pushed to see if he would go so far as to call him a "badass" but Ray didn't seem comfortable with that language. I am though, so I'll just say it, Dr. Howington is a badass. He also is kind of reminiscent of a shark, but a nice one because he comes with a slight Nashville drawl. Tall, skinny, icy blue eyes, quiet but you can tell he's ruthless. So between Howington (the nice shark) and Farhat (Mr. I Saved Her Life) my mom seems to be getting nothing but the best. Obviously. What else should Pam get?

Another side note, we've discovered Dr. Kuzniar (stoic German) is not German, but Polish. Still stoic, but I think he may be warming up to us. By warm, I mean we get a slight upturn of the lips when we see him now. He also stooped down to my level - when I sang to him "she's got a fever and we're worried about infection", he responded by singing back "I know". Made my day. I will make him my friend by the time this is over. To be fair, he may be stoic because he's tired, the man never seems to leave.

Lastly, yesterday while eating snacks over my mother and chatting mindlessly between the four of us, I made the comment that I feel raspberries are by far the superior berry to cranberries. Before DM had time to disagree with me, my mom raised her hand and flipped it back and forth - the universal sign for "eh, it's a toss up". Classic.

So in summary, temp is ok, not great. White blood cell count is better, not great. Infection is still a mystery. Lungs have stuff and she feels indifferent to cranberries and raspberries.

We're also ok, but not great as I'm sure you can all imagine. Sleeping every night. Drinking wine every night. Wondering where in the hell any of us got the strength to get through this and then realizing that for her we'd do anything.

It's A Mystery!

Today is another sleepy day. She had a fever last night and this morning so she was under the cooling blanket with ice bags in her armpits. You can imagine how awesome that feels. But as of about an hour ago her temperature is 99.1 - that's a low grade fever. Anything above 100.5 is cause for alarm. However, her white blood cell count is up since yesterday which is a sign of infection. Mr. Infectious Disease has been called in. (I haven't met him yet otherwise you know I would give you one of my super helpful descriptions.) They're doing what they can to hunt down the infection. Take blood, do X-rays etc. This morning they did a CT scan to even check the brain. That's when we all stopped breathing of course. But sound the trumpets, the scan came back clear. And her lungs seem fine too. It remains a mystery for the time being - leave it to my mother to require a team of experts. I wouldn't be surprised if she's just messing with everyone to see how hard she can make them work. I can just hear her, "Oh please, that's all you've got?"

The other little issue is that her intestines have made the decision to take a break. I guess that happens now and then after people have surgery, but that doesn't mean it isn't cause for concern. Until they decide to check back in, mom can't have any more snacks. I know she's always on a diet and whatnot, but I think she's gone too far this time. So today's mission, find the infection and wake up the intestines.

Needless to say, today will probably be a long one.

What else can I tell you? We brought CD's today, she's been listening to Cole Porter. Every once in a while she yawns. And every day she starts to look more and more like herself as the swelling goes down. She sleeps a lot, squeezes her ball, sometimes throws it and spends a lot of time moving her right leg around.

I can feel you all holding a collective breath. I am too. I think it'll be just a little bit longer though.

A Visit To The Principal's Office.

We had our social worker meeting yesterday. It felt a bit like an intervention or being sent to the principal's office. We all behaved though and no one laughed awkwardly. First we all went around the table and introduced ourselves which was hilarious because after 10 days here we've pretty much become buddies with the doctors and the nurses. The ICU doctor (a fairly stoic German man who mom refuses to do tricks for), the Neurologist (a gentle man with a grey mustache that's slightly reminiscent of Tom Selleck), Maryanne (our favorite nurse who feels like a mix between a Disney princess and Mary Poppins), a med student (who looked generally overwhelmed), some other neuro lady (nice enough I guess) and then the social worker and a woman who focuses on aftercare. Oh wait, also a brain surgeon - not Mr. I Saved Her Life because he's on vacay (natch), but another brain surgeon who was my personal favorite of the bunch because he seemed to be the most energetic. They told us the same stuff. The summary being "all in all she's doing really well considering what she's been through." Personally I think she's doing amazing, in fact I would describe it as "kicking ass and taking names", but I don't think that's something they feel comfortable using in official hospital meetings. She will only continue to recover at this point. The swelling has peaked and is on it's way down so in the next few days she'll become more active and more responsive. They also repeated for the millionth time how long of a road it would be and then laid on some Hallmarkian niceties. She's not out of the woods of course. She will probably get an infection here and there, but the stronger she gets the easy it will be for her to fight those.

By next Wednesday we hope to get her out of the ICU. Fingers crossed, toes crossed, lucky pennies, clovers, bunny feet etc. But where to next? Well, she had her tracheostomy today (which is great because she looks way more comfortable) and if she can breathe without the ventilator then she can go to the stroke floor for acute care. Just to be uber clear, she's breathing without the ventilator mostly now, but they put her on it at night so she can rest a bit. The ICU Dr. (stoic German) feels confident that she'll be able to handle it. She is PAM after all. After acute care, she'll go to a rehab center and work her tiny butt off. We don't know where that will be yet. They recommend we visit a few places before making a decision, but that's not something that we have to consider quite yet.

The less great news is that they don't think her left side will be functional. Now I get that I'm asking a lot from the universe, I mean, I did get my mom back. I can hear all of your voices saying "but at least…". Ya ya. I know. BUT. Think about THIS. You all know my mom. She doesn't like not being able to help herself. I'm terrified of watching her realize she will have to rely on others. One of two things will happen, she will close off and shut down or she will breathe hell fire and fight through. I'd prefer the latter, but I fear it will be the former. The stand-in brain surgeon (the energetic one) returned after the meeting and said that's it's "possible" that she could regain some movement in her left leg. We'll know by 3 months. Last night while we played her tunes and danced, she was twitching it, so here's to hoping.

While we sit here eating our Jimmy Johns and drinking Diet Coke she's getting a feeding tube in her stomach so she can get it out of her nose. Another thing to make her more comfortable and also draw less attention to her nose - something I know she'll appreciate. Thumbs up to that.

Aw Snap.

I don't have kids, but I imagine the way I love my mom is the way people love their children. It's in my soul, it's from a place that I can't identify. When my mom opens her eyes, looks at me and starts waving with her foot, I just cry. And then she cries and I feel horrible because I can see her. She's in there. Trapped and pissed. All I can do is wait and let her know that she's climbing and fighting towards me and that when she gets out I'll be there. It's horrible. I can't lie.

I'll give you the shit news first. We're a little nervous there might be an infection. White blood cells are up. Maryanne (aka favorite nurse) took blood samples, but we won't know anything for 24-48 hours. She's on prophylactic antibiotics for the time being, but once we can get a definitive answer they can get more specific with the treatment. That's it. That's all the bad news. We have a family meeting with the social worker at 3 - I'm sure that will be a bundle of fun too.

On the bright side we had another fun night with her last night. Rocked out to Queen. I snapped and she snapped. She snapped people! A lot and on command. It was absolutely amazing. We took video obviously because we never know when we're just hallucinating. She did it for Maryanne this morning too. And then Maryanne brought in witnesses to make sure she wasn't imagining it either. My mother continues to astound.

The tracheostomy is still scheduled for tomorrow afternoon. I think it will be a relief for all of us. She tries to grab for the tube every chance she gets and making her more comfortable however we can is what's important.

She's listening to music, kicking her leg non-stop, waving, snapping, and squeezing the ball like mad. So it goes. Go Pam Go.

Bedside Blue

There comes a time when enough is enough. How long can one go without a manicure? The answer is 7 days. I've painted her nails a nice periwinkle blue - Lapiz of Luxury to be exact. It matches lots of things here, the tubes, the buttons, our favorite nurses nails and even the arm restraints. Sorry, ICU humor. I've been here a while.

So yesterday we worked on 'yes' and 'no' codes. Thumbs up = yes. One finger = no. It's not the middle finger though. I know you were all thinking that. She just points. We entrusted DM to DJ while we ate dinner and she gave him the finger for playing Etta James. She always has an opinion and she will always let us know.

They performed an EEG this morning. That stands for electroencephalogram. Say that five times fast. OR say hemidemisemiquaver. According to my mom's phone that is today's word - it means a sixty-fourth note. Again, I digress. The EEG is "a test that measures and records the electrical activity of your brain by using sensors." Essentially they're testing to make sure she isn't having seizures. We haven't gotten the results yet.

She's breathing on her own, still not gagging. I'm starting to feel like a broken record. We had a chat with the nurse practitioner today. If she doesn't gag by Friday morning, the thoracic team will give her a tracheostomy which will allow her to get the tubes out of her throat and away from her vocal chords. I can't wait until she uses those. They will perform is bedside.

We (me, DM and KTO) stayed late last night drinking wine and watching a thunderstorm. It was a relief to see the sky so angry too. I told her I was tired and I needed to sleep, she gave me a thumbs up so I went home.

I'm still definitely in shock and in no way have I comprehended what's happening right now. Sometimes I just listen to her voicemails - her talking about "this damn dog" or "how to get this freaking computer to work". One of these days it will catch up to me, but at the moment I'm in Pam-mode. Just keep fighting. Use your teeth and use your nails. Just "go Appalachian" on their asses. And I thank her for teaching me that.

I hope each of you is having a lovely Wednesday and call your mom.