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.
Thursday, 31 July 2014
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.
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.
Wednesday, 30 July 2014
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.
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.
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.
Tuesday, 29 July 2014
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.
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.
Monday, 28 July 2014
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.
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.
Sunday, 27 July 2014
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.
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.
Saturday, 26 July 2014
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.
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.
Friday, 25 July 2014
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.
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.
Thursday, 24 July 2014
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.
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.
Wednesday, 23 July 2014
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.
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.
Bedside buzz
Sorry the update is late. We've just shaved my mom's head. Yes, read that sentence again. We've just shaved my mom's head. Turns out she can really rock the GI Jane. Last night Josephine (another fantastic nurse) let us in on a little secret - if we HAVE to put in a tracheostomy we won't be able to cut her hair. I mean, the half mane was nice and all, but we decided that perhaps she might enjoy a nice clean start. The whole thing was quite the team effort, the respiratory nurse Ray (who shaves his head, so naturally I had to have him involved) and Lauren (the ICU nurse) helped to turn her head and make sure she was comfortable. Don Marshall actually did the buzzing after Sally and I did some trimming with the scissors. Watching my husband help my mom with such care and compassion was one of the most beautiful things I've ever seen. He is someone my mom considers to be like a son and today I saw him truly love her like a mother. It's something I will never forget. It wasn't easy. Not for a minute. We all know how my mom feels about her hair, but it was heartbreaking and heartwarming at the same time.
In other news, she opened her eyes yesterday. It was a few seconds, but we saw her and hopefully she saw us. I know she heard us because we all screamed. You can see her squeeze her eyelids from time to time and every once in a while if we're lucky we get another tiny peak. You can tell she's working on it. Who knows what else she might have in store for us. She also continues to play possum, meaning she doesn't really like to do tricks for anyone but us. I know it's hard to believe, Pam not doing what she's told. Apparently she also moved her left leg on command last night which is HUGE considering the left has been fairly unresponsive. Breathing on her own. Still intubated. Ray (the head shaven respiratory nurse) seems to disagree about the gag reflex. He thinks it's there. I told him to "go have some words" with the doctors. Not sure if he'll go that far, but said he would talk to them about it. Right now, she's getting her spa treatment - some of us might call it a bath.
I'm sitting in the lobby under an enormous sky light, my Aunt Dee is reading the paper. Each of us is trying to figure out who (if anyone) should take the night shift now that Rick has had to go back home.
I continue to remain hopeful and vigilant. I can't believe how happy I am to just sit and stare at her. Just hoping pretty soon she'll stare back at me. That's what I've got for now.
In other news, she opened her eyes yesterday. It was a few seconds, but we saw her and hopefully she saw us. I know she heard us because we all screamed. You can see her squeeze her eyelids from time to time and every once in a while if we're lucky we get another tiny peak. You can tell she's working on it. Who knows what else she might have in store for us. She also continues to play possum, meaning she doesn't really like to do tricks for anyone but us. I know it's hard to believe, Pam not doing what she's told. Apparently she also moved her left leg on command last night which is HUGE considering the left has been fairly unresponsive. Breathing on her own. Still intubated. Ray (the head shaven respiratory nurse) seems to disagree about the gag reflex. He thinks it's there. I told him to "go have some words" with the doctors. Not sure if he'll go that far, but said he would talk to them about it. Right now, she's getting her spa treatment - some of us might call it a bath.
I'm sitting in the lobby under an enormous sky light, my Aunt Dee is reading the paper. Each of us is trying to figure out who (if anyone) should take the night shift now that Rick has had to go back home.
I continue to remain hopeful and vigilant. I can't believe how happy I am to just sit and stare at her. Just hoping pretty soon she'll stare back at me. That's what I've got for now.
Bedside Babbles
Are you sick of hearing me yet? In the spirit of Pam, I'm just going to keep talking. I mean that in the best way possible. She always "babbles" as she calls it and then stops and says "are you sick of hearing me talking?" and then she just keeps going. It's one of my favorites. Always manages to fill the silence and be totally entertaining doing it. I've tried doing it for her, but I just don't have that skill....yet...I'm working on it.
Anyhow, the cervical collar came off today. Cervical collar = fancy word for uncomfortable neck brace. She seems more comfortable without it. Breathing on her own some more. Just had her teeth brushed and ready to kick another day's ass. Just sitting here watching her work with PT - she's actually helping with the exercises. Just Pam being Pam, always over-achieving. If she doesn't get an A+ then it doesn't count.
I should probably share how crazy the universe is. This happened while my mom was exercising in the little gym in the downstairs of her condo building. The person who found her is a young man who happened to be visiting his parents and after a few days decided to stop procrastinating and get his ass to the gym. He saw her laying on the floor and just assumed she was stretching. He told her he hoped he wasn't bothering her, but she didn't respond. He saw her earbuds in, so figured she just didn't hear him. And then he realized the buds weren't plugged in. He called 911. I'm sure that 2 minutes was the longest two minutes of his life, but I will never be able to thank him and the universe enough for everything they've given me.
One last note about the universe, we had a new respiratory person last night I'd never met. I commented that he was wearing black scrubs rather than the pink that all the respiratory folks wear. He said "ya, I decided I didn't want to wear the 'wine' color, I wear my black ones on the weekend." It made me so happy to know that she's surrounded by people who also buck the system. Follow rules? I don't think so. Not when you could look great in black. It's so slimming. He was also a trip. Full of laughs. Made my night.
Another day, another fight.
Anyhow, the cervical collar came off today. Cervical collar = fancy word for uncomfortable neck brace. She seems more comfortable without it. Breathing on her own some more. Just had her teeth brushed and ready to kick another day's ass. Just sitting here watching her work with PT - she's actually helping with the exercises. Just Pam being Pam, always over-achieving. If she doesn't get an A+ then it doesn't count.
I should probably share how crazy the universe is. This happened while my mom was exercising in the little gym in the downstairs of her condo building. The person who found her is a young man who happened to be visiting his parents and after a few days decided to stop procrastinating and get his ass to the gym. He saw her laying on the floor and just assumed she was stretching. He told her he hoped he wasn't bothering her, but she didn't respond. He saw her earbuds in, so figured she just didn't hear him. And then he realized the buds weren't plugged in. He called 911. I'm sure that 2 minutes was the longest two minutes of his life, but I will never be able to thank him and the universe enough for everything they've given me.
One last note about the universe, we had a new respiratory person last night I'd never met. I commented that he was wearing black scrubs rather than the pink that all the respiratory folks wear. He said "ya, I decided I didn't want to wear the 'wine' color, I wear my black ones on the weekend." It made me so happy to know that she's surrounded by people who also buck the system. Follow rules? I don't think so. Not when you could look great in black. It's so slimming. He was also a trip. Full of laughs. Made my night.
Another day, another fight.
Bedside notes continued
Yesterday evening as the sun was setting mom and I played catch. I have video to prove it, so I know I didn't dream it. I would say "squeeze" she would squeeze, then I would say "throw" and amazingly she would toss the ball to me. I sent the video to a select few of you. I would attach it to this email, but I just know she would be totally appalled if she knew there was a video out there without her hair and nails done.
Last night DM and I threw a little party with her. He and I split a bottle of wine and the three of us rocked out to classical music. I tried to find the Beatles, but the only channels are "new age", "smooth jazz" or "classical". It seemed like the right choice.
Breathing on her own, but still intubated because she won't gag. She does bite however which makes me happy, but not the respiratory nurses. I've spent a lot of time this morning trying to figure out how to make her gag, but even reference to some of her least favorite things is still not working.
I have no idea how any of us are getting through this. It's a constant dream state. Just on autopilot. Sleep, eat, go to hospital and repeat. We are all managing to hold it together - each of us takes our turn throughout the day to have a little meltdown. But never in front of her.
You've all been asking if there's anything we need or anything you can do. You're doing it. So far not feeling alone has been the biggest help. Just knowing that the enormous family that my mom has built is out there supporting us is huge.
Last night DM and I threw a little party with her. He and I split a bottle of wine and the three of us rocked out to classical music. I tried to find the Beatles, but the only channels are "new age", "smooth jazz" or "classical". It seemed like the right choice.
Breathing on her own, but still intubated because she won't gag. She does bite however which makes me happy, but not the respiratory nurses. I've spent a lot of time this morning trying to figure out how to make her gag, but even reference to some of her least favorite things is still not working.
I have no idea how any of us are getting through this. It's a constant dream state. Just on autopilot. Sleep, eat, go to hospital and repeat. We are all managing to hold it together - each of us takes our turn throughout the day to have a little meltdown. But never in front of her.
You've all been asking if there's anything we need or anything you can do. You're doing it. So far not feeling alone has been the biggest help. Just knowing that the enormous family that my mom has built is out there supporting us is huge.
Notes from the Bedside
First of all, they shaved her head when they did the surgery. If you know Pam, you know she is going to be PISSED about that. They took her head wrap off today - she's half Sinead O'Connor and then half "totally 80s" with an awesome side pony tail. Again. I can only imagine what she has to say about that.
Today is more critical than any of us thought. So karma. Lots, piles, tons of karma. She was running a fever (which is since down thanks to a nice cooling blanket and of course chemical support) and also has a bit of an issue in her lungs. That's the scariest piece. The risk of pneumonia. She's on antibiotics.
Yesterday she was really responsive. Giving thumbs up to all inappropriate jokes amidst lively conversation. I made the joke that our family fully believes in taking drugs for better living - she gave a thumbs up. Pam's in there for sure. She also attempted to throw a pillow. Again. Pam. THEN she actually managed to figure out through a few different steps how to tell me that she really needed me to scratch her leg. Which obviously I did and then we figured out our own shorthand for it. The woman is a genius. The one fun bit of today is that she's figured out how to open her left eye just a bit. Enough so we can see her. Then we all get really close to her face and wave obnoxiously which I'm sure is either hilarious or irritating as hell. When she opens it, she tells us by "pointing" to her face. She can only point so much because she has a restraint on her arm. Why does she have a restraint you ask? Because naturally Pam hates her ventilator so she goes for it when she's got a chance. In fact, when I reprimanded her (which obviously I would never get away with under any other circumstance) she showed her displeasure by trying to use my hand to get it out. Sneaky. But Pam.
So, that's the scoop as of now. There's a little swelling. A little fever. And a little infection. It's scary. I'm really scared. That's obviously an understatement. I'm desperate and terrified. I know you all are sending love and support. And I thank you. As you all know my mom is my other half. She's my hero and my lifeline. She's fighting like she always does.
As far as my dad. He's probably doing about the same as me. He finally slept last night so he's ready to kick ass today. I know you want to help. I wish you could. The nurses here are spectacular. Completely vigilant and to me seem like living angels. Again. I'm getting all of the texts and messages, and it's helping. I just don't have the heart and energy to respond. I have to save myself for her.
There are probably folks I left off. Please feel free to forward. Signing off.
Today is more critical than any of us thought. So karma. Lots, piles, tons of karma. She was running a fever (which is since down thanks to a nice cooling blanket and of course chemical support) and also has a bit of an issue in her lungs. That's the scariest piece. The risk of pneumonia. She's on antibiotics.
Yesterday she was really responsive. Giving thumbs up to all inappropriate jokes amidst lively conversation. I made the joke that our family fully believes in taking drugs for better living - she gave a thumbs up. Pam's in there for sure. She also attempted to throw a pillow. Again. Pam. THEN she actually managed to figure out through a few different steps how to tell me that she really needed me to scratch her leg. Which obviously I did and then we figured out our own shorthand for it. The woman is a genius. The one fun bit of today is that she's figured out how to open her left eye just a bit. Enough so we can see her. Then we all get really close to her face and wave obnoxiously which I'm sure is either hilarious or irritating as hell. When she opens it, she tells us by "pointing" to her face. She can only point so much because she has a restraint on her arm. Why does she have a restraint you ask? Because naturally Pam hates her ventilator so she goes for it when she's got a chance. In fact, when I reprimanded her (which obviously I would never get away with under any other circumstance) she showed her displeasure by trying to use my hand to get it out. Sneaky. But Pam.
So, that's the scoop as of now. There's a little swelling. A little fever. And a little infection. It's scary. I'm really scared. That's obviously an understatement. I'm desperate and terrified. I know you all are sending love and support. And I thank you. As you all know my mom is my other half. She's my hero and my lifeline. She's fighting like she always does.
As far as my dad. He's probably doing about the same as me. He finally slept last night so he's ready to kick ass today. I know you want to help. I wish you could. The nurses here are spectacular. Completely vigilant and to me seem like living angels. Again. I'm getting all of the texts and messages, and it's helping. I just don't have the heart and energy to respond. I have to save myself for her.
There are probably folks I left off. Please feel free to forward. Signing off.
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