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.
Wednesday, 27 August 2014
Tuesday, 26 August 2014
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.
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.
Sunday, 24 August 2014
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.
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.
Thursday, 21 August 2014
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.
Wednesday, 20 August 2014
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.
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.
Tuesday, 19 August 2014
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.
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.
Monday, 18 August 2014
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.
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.
Sunday, 17 August 2014
Saturday, 16 August 2014
...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.
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.
Friday, 15 August 2014
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!
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!
Wednesday, 13 August 2014
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.
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.
Tuesday, 12 August 2014
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.
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.
Sunday, 10 August 2014
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.
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.
Saturday, 9 August 2014
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$$ women) were swaying to and fro to some serious Disney beats. I know the Broadway Show has NOTHING on this performance.
Are you smiling yet? Because Pam was.
First, the basics. She still has the trach and is still mouthing words. Is also still determined to remove the trach herself which I'm sure she will continue to do until next Wednesday - that's the day the ENT is hoping will be "replace the trach" day. She's still doing Pam-code, which has yet to be decrypted.
Meanwhile, as some of you may have gathered, she smiled last night. Let me set the scene for you. Of course, I'm taking creative license here since I clearly didn't participate, but I've been given descriptions and I'm the one writing so...
Scene: a beautifully decorated hospital room. Envision the large fuschia and polka dotted poofs, newly added butterflies, a smattering of cards full of well wishes and of course the Go Pam Go sign are all offset by the lovely faded sea foam green walls and dirty dishwater grey linoleum floor.
Cast:
Debbie......fairy godmother A
Wendy.......fairy godmother B
Sharon......fairy godmother C
Dee.........Aunt/sister and fairy godmother D (see what I did there? D for Dee. Genius)
Mom.........hero, legend, ass-kicker and spirit animal
Wendy: "Let's play some music."
(the characters look at each other, each gives the normal shoulder shrugs, nods of approval etc, Dee of course cringes a little as music is not necessarily "her thing", but abides as this is for her sister for whom she would do anything. EVEN LISTEN TO MUSIC.)
Suddenly the dim of the florescent lights and the slightly arhythmic beeps of the machine are drowned out by a glorious blast of the Lion King soundtrack. Why? I don't know, just go with it. The music begins to play and the characters feel something move deep within their souls. Gloria Estefan was right, the rhythm IS gonna get you. And it did. They begin to dance. Soon all four characters (grown a$$ 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.
Friday, 8 August 2014
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.
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, 7 August 2014
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.
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.
Wednesday, 6 August 2014
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.
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.
Tuesday, 5 August 2014
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?
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?
Monday, 4 August 2014
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.
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.
Sunday, 3 August 2014
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.
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.
Saturday, 2 August 2014
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).
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).
Friday, 1 August 2014
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.
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.
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