Well, a good day today! Went to the Chamber Exec. Board meeting this morning, and no one ran screaming from the room! My debut back into "polite society" as it were... The public outing was such a success that I decided to stop into Rite Aid on the way home and buy up all of their eye drops - or at least $70 worth...
In addition to being a major public outing and shopping expedition, it was also my first solo car trip - very empowering. One can only wonder how far off a trip to Macy's can be?
Of course, after all the excitement, I had to nap for awhile. The fatigue still surprises me - it is swift and can't be denied!
My next week of IV supplies came today, and the nurse is coming tonight to change the dressing on the PICC line again. I'm becoming a regular pro at the IVs. (Talk about a useless skill...)
Dishwasher repair guy is here now trying to figure out what is wrong with the dishwasher. I'm sure not impressed with GE appliances. Anyway, it will be nice to have the dishwasher back - even though paper plates seem to work just fine...
Mom and Dad are pulling up stakes tomorrow. Going to miss them, but I know it's time - and I feel that I am doing so well that I don't need to keep them here any longer. Darn kids - they always want to go and leave the nest...
Well, more later...
Thursday, May 29, 2008
Wednesday, May 28, 2008
Notes from the Northern Compound...
Things are relatively stable in Acoustic Neuroma aftermath. (Ssshh - don't want to temp the fates...)
Yesterday the VN came by to draw blood - and what should have been a simple procedure ended up taking over an hour. It culminated with something getting stuck in the IV line; when that was finally unstuck, she screwed the IV on so tight that I couldn't get it to budge. So, a rather long a stressful morning, but all ended well.
You may recall that the dishwasher exploded a few days before I went back to the hospital - well, today, the fridge sprung a leak! It is as if the black cloud has now encomassed our appliances. Anyway, enough being enough, I got on the phone and now have someone coming out tomorrow to fix both appliance. Ka-ching, Ka-ching ... but what the hell.
Willie's dad is being sprung from the sub-acute center this weekend (adding yet more stress to the mix), so Willie is busy trying to get all of the arrangements made. The rehab folks are working hard to get Phil very comfortable walking again, either with cane or walker. Not sure yet what he will come home with, but hopefully both. Anyway, it promises to be an exciting weekend .... sigh.
Meanwhile, I contacted a leading rehab facilityin NJ and scheduled an appointment for a facial therapy session next Thursday. It's about a half hour away, so will be a test of my driving ability. However, I need to get out and test things a bit - and as long as I stay on surface roads, I will be able to pull over and put drops in my eyes.
I will also schedule an appt with an opthamologist to monitor my eye. Since it doesn't produce any tears yet, keeping it lubricated is a big deal - can't run the risk of damaging my cornea! Can you imagine being both deaf AND blind on the right side!! Eeek!
On a happy note, I am getting a nice stubble behind my ear where they shaved for the surgery! It itches like crazy, but when the hair grows out you won't even be able to see the scar - wahoo! Dr. Roland did a very nice job with that. He's the man! His residents refer to his shaving prowess as "the Roland technique." :)
All else quiet on the norther front. I think Mom and Dad are going to saddle up and pull out on Friday - I know they are anxious to get out to Oregon and get settled into the condo for the summer. Not to mention, they've got all their own doctors appointments to schedule. They are busy looking at maps and weather forecasts, trying to plot a course across the northern states that will avoid tornadoes and such.
More later...
Yesterday the VN came by to draw blood - and what should have been a simple procedure ended up taking over an hour. It culminated with something getting stuck in the IV line; when that was finally unstuck, she screwed the IV on so tight that I couldn't get it to budge. So, a rather long a stressful morning, but all ended well.
You may recall that the dishwasher exploded a few days before I went back to the hospital - well, today, the fridge sprung a leak! It is as if the black cloud has now encomassed our appliances. Anyway, enough being enough, I got on the phone and now have someone coming out tomorrow to fix both appliance. Ka-ching, Ka-ching ... but what the hell.
Willie's dad is being sprung from the sub-acute center this weekend (adding yet more stress to the mix), so Willie is busy trying to get all of the arrangements made. The rehab folks are working hard to get Phil very comfortable walking again, either with cane or walker. Not sure yet what he will come home with, but hopefully both. Anyway, it promises to be an exciting weekend .... sigh.
Meanwhile, I contacted a leading rehab facilityin NJ and scheduled an appointment for a facial therapy session next Thursday. It's about a half hour away, so will be a test of my driving ability. However, I need to get out and test things a bit - and as long as I stay on surface roads, I will be able to pull over and put drops in my eyes.
I will also schedule an appt with an opthamologist to monitor my eye. Since it doesn't produce any tears yet, keeping it lubricated is a big deal - can't run the risk of damaging my cornea! Can you imagine being both deaf AND blind on the right side!! Eeek!
On a happy note, I am getting a nice stubble behind my ear where they shaved for the surgery! It itches like crazy, but when the hair grows out you won't even be able to see the scar - wahoo! Dr. Roland did a very nice job with that. He's the man! His residents refer to his shaving prowess as "the Roland technique." :)
All else quiet on the norther front. I think Mom and Dad are going to saddle up and pull out on Friday - I know they are anxious to get out to Oregon and get settled into the condo for the summer. Not to mention, they've got all their own doctors appointments to schedule. They are busy looking at maps and weather forecasts, trying to plot a course across the northern states that will avoid tornadoes and such.
More later...
Monday, May 26, 2008
Happy Memorial Day
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Friday morning, the hospital "limo" service arrived with a bed to take me to radiology to have my PICC line installed - unpleasant doesn't really describe it. I hope that I never have to have this done again - but if I do, I may ask to be knocked out first. I was throroughly unnerved!
All the interns, residents, plus Drs. Roland and Louie (infectious diseases) visited me during the day. Because they were unable to grow a good sample from the culture, they will continue to treat me with a broad spectrum antibiotic. I'll need twice a day IVs for at least two weeks, then we'll see.
I was finally released from NYU at about 7 PM on Friday(after they administered my second dose of antibiotics) - made it home by 8:30 and crashed! Saturday at about 7:30 AM, the Visiting Nurse (Lea) arrived to show us how the PICC line works. It was surprisingly easy and painless (whew!) I spent much of Saturday sleeping - I was VERy tired. Turns out that the antibiotics also make you tired - because fatigue wasn't a big enough challenge already!
Yesterday my friend Ellen came up from Princeton for a visit, which was great. Unfortunately, I was totally exhausted after hours and had to lay down and sleep (I'm not much fun these days!). Last night, I wanted to try to tackle the IV by myself, so I got my sterile area all set up and set to work. The hardest part is that the "nozzle) is located at the inside of my elbow on my right arm (and I am right handed), so I have to try to unscrew it using my left hand only. I find that if I get it wedged between two fingers I can then use one other finger and the thumb to unscrew it. Awkward, but it works. Anyway, I did my morning IV all by myelf (oh, aren't I a Big Girl now!).
I am also becoming adept at wrapping my right arm in platic wrap and taping up the ends in order to shower. Actually, I am sure I am quite a site - eye patched shut, arm wrapped up, big black and blue incision on my stomach.... wow, what a hottie.
This morning, I got Willie to drive with me to Lowe's (I drove, bleary eye and all - Willie tried to remain calm in the passenger's seat) so that I could buy several flats of flowers to plant. I picked out my flowers, and off we went. Even made a hot-lap through the grocery story (talk about sensory overload - yikes!) I spent about an hour outside planting - good for the soul. It's a beautiful day, so perfect to dig in the dirt.
My eye is driving me crazy - seems that I have to put drops in at about every 10 minutes. Really a nuisance I'm freaked about driving more than 15 minutes, because my eye gets so scratchy.
But, the GOOD news is that I now have a small twitch below my right eye - and I can totally control it, which means that it is the very first bit of muscle movement on that side of my face. The doctor had told me that the central part of my face (cheek area) will be the first to come back - eye and mouth last. Anyway, it is a small step forward!
So, for those who want to see the "lemon/hand grenade antibiotic dispenseer, here's the the photos: (Dont' worry, nothing gross at all!)
Thursday, May 22, 2008
Update from NYU Med Center
Well, here I am in Bed 1164 at NYU - my home since Tuesday.
Dr. Roland decided, based on the photo I emailed him Tuesday morning, that we needed to take "the next step" which was admitting me to the hospital again. Got into my room by 2 PM and got situated. Then, the procession of interns, residents, fellows, and doctors began...
Mom and Dad stayed at the Northern Compound to look after things there, while Willie came in and settled at Chez Lee on E. 50th Street...
Sparing you all the gory details - the docs took a good "sample" from my incision and sent it off to be cultured - basically, me head in a petri dish... In the interim, the Infectious Disease (nice title, huh?) doctor, Dr. Louie, put me on a couple of broad spectrum IV antibiotics. Dr. Roland put me on the surgery schedule for Weds and we all settled in to wait.
Kura came by for a visit; then Willie and I settled in the patient waiting room and watched American Idol - date night at NYU.
On Weds, Dr. Roland was pleased that the infection seemed to be slightly better, so at about 3 PM, made the decsion to cancel the planned surgery and stay with the IV antibiotic regimen. Yay!! I was definitley NOT looking forward to having another surgical procedure, even a minor one.
After dispatching Willie to find food for me (I had been fasting since dinner on Tuesday night), I asked Dr. Roland if it might be possible for me to see a facial therapist as long as I am captive here - bless that man, he got right on it!
Today started with the usual early AM visits from the residents and interns, followed by Dr. Roland's Fellow, followed by Dr. Roland - all pleased with the way things are looking. I'm not cured, but at least it is not getting worse which is great. A little later the facial therapist came in to see me, which was a bright spot. He gave me some simple exercises to do 3 times a day - and cautioned me not to get discouraged if I don't see any improvement for the first few weeks! I will attack this with a vengence as I really do want to give my face every opportunity to get back to normal.
The next visitor of the morning was Dr. Louie with the news that the culture isn't yielding the answers he was looking for in terms of a specific identity of the "bug" - he said that he'll continue to treat this with a broad spectrum IV antibiotic. Which means that I'll be coming home with a "picc" so that I can administer an IV twice a day at home. Apparently, he will arrange for a nurse to come by the house several times to draw blood also so that he can monitor things. I'll need to come back into NYC to see him before the PICC comes out. This all set me back a bit, as I guess I was hoping that I'd be able to get by with oral antibiotics. However, I guess Willie and I will become adept at IVs now - one more thing for the old resume... :)
Willie is back in NJ today taking his dad from the rehab facility to his surgeon's office - hopefully this will give them the green light to start the next phase of PT which will enable him to start weight-bearing therapy. One step closer to coming home for Phil. I think Willie will be driving back into NYC tonight, with the hope that I will be released tomorrow morning.
Well, it certainly has been an eventful week - not exactly in the way I had hoped ... I am hoping for a very quiet and uneventful holiday weekend! I could use some patio time ...
Well, that's it from Bed 1164 for today - hopefully the next post will be from home...
Dr. Roland decided, based on the photo I emailed him Tuesday morning, that we needed to take "the next step" which was admitting me to the hospital again. Got into my room by 2 PM and got situated. Then, the procession of interns, residents, fellows, and doctors began...
Mom and Dad stayed at the Northern Compound to look after things there, while Willie came in and settled at Chez Lee on E. 50th Street...
Sparing you all the gory details - the docs took a good "sample" from my incision and sent it off to be cultured - basically, me head in a petri dish... In the interim, the Infectious Disease (nice title, huh?) doctor, Dr. Louie, put me on a couple of broad spectrum IV antibiotics. Dr. Roland put me on the surgery schedule for Weds and we all settled in to wait.
Kura came by for a visit; then Willie and I settled in the patient waiting room and watched American Idol - date night at NYU.
On Weds, Dr. Roland was pleased that the infection seemed to be slightly better, so at about 3 PM, made the decsion to cancel the planned surgery and stay with the IV antibiotic regimen. Yay!! I was definitley NOT looking forward to having another surgical procedure, even a minor one.
After dispatching Willie to find food for me (I had been fasting since dinner on Tuesday night), I asked Dr. Roland if it might be possible for me to see a facial therapist as long as I am captive here - bless that man, he got right on it!
Today started with the usual early AM visits from the residents and interns, followed by Dr. Roland's Fellow, followed by Dr. Roland - all pleased with the way things are looking. I'm not cured, but at least it is not getting worse which is great. A little later the facial therapist came in to see me, which was a bright spot. He gave me some simple exercises to do 3 times a day - and cautioned me not to get discouraged if I don't see any improvement for the first few weeks! I will attack this with a vengence as I really do want to give my face every opportunity to get back to normal.
The next visitor of the morning was Dr. Louie with the news that the culture isn't yielding the answers he was looking for in terms of a specific identity of the "bug" - he said that he'll continue to treat this with a broad spectrum IV antibiotic. Which means that I'll be coming home with a "picc" so that I can administer an IV twice a day at home. Apparently, he will arrange for a nurse to come by the house several times to draw blood also so that he can monitor things. I'll need to come back into NYC to see him before the PICC comes out. This all set me back a bit, as I guess I was hoping that I'd be able to get by with oral antibiotics. However, I guess Willie and I will become adept at IVs now - one more thing for the old resume... :)
Willie is back in NJ today taking his dad from the rehab facility to his surgeon's office - hopefully this will give them the green light to start the next phase of PT which will enable him to start weight-bearing therapy. One step closer to coming home for Phil. I think Willie will be driving back into NYC tonight, with the hope that I will be released tomorrow morning.
Well, it certainly has been an eventful week - not exactly in the way I had hoped ... I am hoping for a very quiet and uneventful holiday weekend! I could use some patio time ...
Well, that's it from Bed 1164 for today - hopefully the next post will be from home...
Monday, May 19, 2008
Watch and Wait...
So, we took the head dress off yesterday morning to discover that there was still a fair amount of drainage. Willie emailed the surgeon who gave us instructions (and cleared me to wash my hair!). Spend the day being quiet and napping - yea, they don't call me Mrs. Excitement for nothing.)
Up this morning and had mom and dad help with the cleaning process - and unfortunately, still quite a bit of gunk. Mom had the great idea to take a close up picture which I emailed to Dr. Roland. He followed up with more instructions and the decision to give it another 24 hours. If it is not better tomorrow morning, back to the hospital for a deep cleaning and reclosure and probably 48 hours in the hospital. I am SO discouraged by the thought of going back to the hospital - arrgghhh. However, we'll see what tomorrow brings.
So, light a candle and send up some good thoughts, prayers, etc and think "goo begone!"
More later from the Northern Compound...
Up this morning and had mom and dad help with the cleaning process - and unfortunately, still quite a bit of gunk. Mom had the great idea to take a close up picture which I emailed to Dr. Roland. He followed up with more instructions and the decision to give it another 24 hours. If it is not better tomorrow morning, back to the hospital for a deep cleaning and reclosure and probably 48 hours in the hospital. I am SO discouraged by the thought of going back to the hospital - arrgghhh. However, we'll see what tomorrow brings.
So, light a candle and send up some good thoughts, prayers, etc and think "goo begone!"
More later from the Northern Compound...
Friday, May 16, 2008
I Sprung a Leak!!
Well, just when you think things are looking up...
I ventured out to a local restaurant with mom, dad and Willie last night and had a great time (no stares, no embarrassing food moments - all around great!)
As usual, Willie and I retired to watch a little mindless TV when I put my had to my head and ... it came away wet! Panic!!!! Willie rushed into action, while I lay curled in a pathetic ball in bed - he cleaned up the incision, which was leaking, called the 24 hour nursing hotline at Aetna, then called our favorite neurotologist, Dr. Roland. The Doc called us back withing 5 minutes (and this was at nearly 10 last night), asked a bunch of questions, which Willile adeptly fielded, and asked Willie to bring me in this morning.
So, we made the 2 hour trip into NYC in the pouring rain this morning and were met promptly by Dr. Roland (who is a hero in my book). He deduced that I was leaking some fluids and possibly some of the fat (damn, I knew that fat should've stayed in my belly where it belonged!) Anyway, NOT a CSF leak, which was the good news!
He cleaned it all up and them put some stiches back in, along with another glorious pressure bandage. I am to keep the bonnet on until Sunday, then off it comes - and back to NYU next Friday to get this batch of stitches out. Meantime, I am on a course of antibiotics to stave off infection.The incision site is pretty painful now (enough to drag out the percoset again for the night, I think). Guess all that tinkering around aggravated it. However, as bumps in the road to recovery go, this isn't that bad, isn it? Still consider myself one lucky gal.
Doc told me to take it very easy for the next couple of days, then resume "normal" activity. So, I took that to heart and spent the afternoon napping in bed.
But, do you want to hear the BEST news??? He said that he is already seeing some small signs of improvement in my face - small, but definite! I was so thrilled to hear this that I actually managed to close my bad eye (yes, I was going for a wink, but didn't quite work out!) I was feeling giddy when we left. So much so, in fact, that I wrapped a scarf around my bonnet and insisted that Willie take me to a diner for a quick meal. I am sure I looked like some kind of festive escapee from an institution - wild scarf, staring eye (that occasionally closes) and lopsided smirk - accompanied by my gallant knight Willie!
So, that's my story for today... and I'm sticking with it...
I ventured out to a local restaurant with mom, dad and Willie last night and had a great time (no stares, no embarrassing food moments - all around great!)
As usual, Willie and I retired to watch a little mindless TV when I put my had to my head and ... it came away wet! Panic!!!! Willie rushed into action, while I lay curled in a pathetic ball in bed - he cleaned up the incision, which was leaking, called the 24 hour nursing hotline at Aetna, then called our favorite neurotologist, Dr. Roland. The Doc called us back withing 5 minutes (and this was at nearly 10 last night), asked a bunch of questions, which Willile adeptly fielded, and asked Willie to bring me in this morning.
So, we made the 2 hour trip into NYC in the pouring rain this morning and were met promptly by Dr. Roland (who is a hero in my book). He deduced that I was leaking some fluids and possibly some of the fat (damn, I knew that fat should've stayed in my belly where it belonged!) Anyway, NOT a CSF leak, which was the good news!
He cleaned it all up and them put some stiches back in, along with another glorious pressure bandage. I am to keep the bonnet on until Sunday, then off it comes - and back to NYU next Friday to get this batch of stitches out. Meantime, I am on a course of antibiotics to stave off infection.The incision site is pretty painful now (enough to drag out the percoset again for the night, I think). Guess all that tinkering around aggravated it. However, as bumps in the road to recovery go, this isn't that bad, isn it? Still consider myself one lucky gal.
Doc told me to take it very easy for the next couple of days, then resume "normal" activity. So, I took that to heart and spent the afternoon napping in bed.
But, do you want to hear the BEST news??? He said that he is already seeing some small signs of improvement in my face - small, but definite! I was so thrilled to hear this that I actually managed to close my bad eye (yes, I was going for a wink, but didn't quite work out!) I was feeling giddy when we left. So much so, in fact, that I wrapped a scarf around my bonnet and insisted that Willie take me to a diner for a quick meal. I am sure I looked like some kind of festive escapee from an institution - wild scarf, staring eye (that occasionally closes) and lopsided smirk - accompanied by my gallant knight Willie!
So, that's my story for today... and I'm sticking with it...
Wednesday, May 14, 2008
Another Day in Post Acoustic Neuroma Paradise...
It is amazing how much better I feel now - I think just having a reason for the fatigue (yea, because brain surgery wasn't good enough!) made a big difference in my attitude.
I've continued with about an hour of client coaching a day, which seems to be the right pace for me. Yesterday I succumbed to the nap again, but today I managed to power through (which I may pay for tomorrow... but what the hell!)
Yesterday I did my first post-surgical gardening - planted the basil and rosemary plants that Kura brought this weekend - boy, that felt good! I had to sit down next to the pots, becasue bending over is so NOT a good idea, but it worked well. It is very weird to be moving so slowly, but I am kind of getting used to paying attention to the limits that my body is imposing.
I really am so fortunate that my balance has come back so well. The only time I really feel precarious is if I get up too suddenly, turn too fast, or when I get up at night (the combination of eye patch and a dark room is very disorienting.)
I talked to Hope yesterday - she had surgery about 3 1/2 weeks before me, so she is a great example . We compared notes on the whole facial thing - lopsided smile, eye that won't tear, etc. It was good to talk to someone who knows exactly what it feels like. She also gave me a tip on a different eye drop, so I dispatched Mom and Dad to Wal-Mart today in search of the new elixir (and I like it!)
I went out for my first solo walk today - didn't get real far, but I felt good! I had the trusty collie with me, not that she provides any level of protection, but hey....
I am trying to make sure I challenge myself at least a little each day. I also sat out on the patio for quite awhile today, listening to various noises and trying to tell where the hell they were coming from. I haven't decided how I feel about SSD yet - really soon to tell. Right now, I am just trying to take some time to process each new sensation without judging it. I am almost ready to try a more challenging dining out experience - I kind of want to test the ambient noise thing a little more now. I'm feeling quite a bit of anxiety about that, so I figure the best thing is to just put myself out there - face down the fear!!
I am feeling very at pease with things today - it's a good day!
Deb
I've continued with about an hour of client coaching a day, which seems to be the right pace for me. Yesterday I succumbed to the nap again, but today I managed to power through (which I may pay for tomorrow... but what the hell!)
Yesterday I did my first post-surgical gardening - planted the basil and rosemary plants that Kura brought this weekend - boy, that felt good! I had to sit down next to the pots, becasue bending over is so NOT a good idea, but it worked well. It is very weird to be moving so slowly, but I am kind of getting used to paying attention to the limits that my body is imposing.
I really am so fortunate that my balance has come back so well. The only time I really feel precarious is if I get up too suddenly, turn too fast, or when I get up at night (the combination of eye patch and a dark room is very disorienting.)
I talked to Hope yesterday - she had surgery about 3 1/2 weeks before me, so she is a great example . We compared notes on the whole facial thing - lopsided smile, eye that won't tear, etc. It was good to talk to someone who knows exactly what it feels like. She also gave me a tip on a different eye drop, so I dispatched Mom and Dad to Wal-Mart today in search of the new elixir (and I like it!)
I went out for my first solo walk today - didn't get real far, but I felt good! I had the trusty collie with me, not that she provides any level of protection, but hey....
I am trying to make sure I challenge myself at least a little each day. I also sat out on the patio for quite awhile today, listening to various noises and trying to tell where the hell they were coming from. I haven't decided how I feel about SSD yet - really soon to tell. Right now, I am just trying to take some time to process each new sensation without judging it. I am almost ready to try a more challenging dining out experience - I kind of want to test the ambient noise thing a little more now. I'm feeling quite a bit of anxiety about that, so I figure the best thing is to just put myself out there - face down the fear!!
I am feeling very at pease with things today - it's a good day!
Deb
Tuesday, May 13, 2008
Monday, Bloody Monday...
Well, everyone said that there would be bad days along the road to recovery … I got a first hand, up close look at fatigue these past few days. After having to nap twice on Sunday, I was sure I would wake up Monday ready to tackle the world – wrong! I woke up bone-tired, which was very discouraging.
Managed to stay up until after lunch, but then slept for several hours. Then, as I was sitting there feeling sorry for myself, I had a thought… wonder if I am going through “withdrawal” from the steroids? I knew that steroids cause sleep interruption and excess energy, so it seemed like stopping them might cause fatigue? I immediately emailed my surgeon with the question, and he responded (with his normal speed) that yes, indeed, fatigue would be common as I end the steroid cycle. He said it should pass in a few days! Yay!!! I felt better immediately!
So, my Big Events for yesterday were to get back to work – I had a call with one of my very favorite clients, so it wasn’t really like working at all – and to go out to eat! Mom and Dad and I headed out for an early dinner at the local diner – egg white omelets with feta and spinach for everyone. Noise level was low, no one stared at me, and all the food stayed in my mouth (ha!) – a victory! Isn’t it funny how our perspective of success changes???
Meanwhile, Phil is still in rehab while they try to get him mobile again. His hip is still healing, but he is progressing very well. I am hoping to get over to see him this week, at least for a short visit. Maybe we can compare incisions! (Okay, I know that is pretty weird, isn’t it?)
Today appears to be a beautiful day, so I am planning an hour or so of work, then perhaps a walk outside. And, a nap …
Managed to stay up until after lunch, but then slept for several hours. Then, as I was sitting there feeling sorry for myself, I had a thought… wonder if I am going through “withdrawal” from the steroids? I knew that steroids cause sleep interruption and excess energy, so it seemed like stopping them might cause fatigue? I immediately emailed my surgeon with the question, and he responded (with his normal speed) that yes, indeed, fatigue would be common as I end the steroid cycle. He said it should pass in a few days! Yay!!! I felt better immediately!
So, my Big Events for yesterday were to get back to work – I had a call with one of my very favorite clients, so it wasn’t really like working at all – and to go out to eat! Mom and Dad and I headed out for an early dinner at the local diner – egg white omelets with feta and spinach for everyone. Noise level was low, no one stared at me, and all the food stayed in my mouth (ha!) – a victory! Isn’t it funny how our perspective of success changes???
Meanwhile, Phil is still in rehab while they try to get him mobile again. His hip is still healing, but he is progressing very well. I am hoping to get over to see him this week, at least for a short visit. Maybe we can compare incisions! (Okay, I know that is pretty weird, isn’t it?)
Today appears to be a beautiful day, so I am planning an hour or so of work, then perhaps a walk outside. And, a nap …
Sunday, May 11, 2008
Today was a Mother...
Mother's Day ...
I woke up totally exhausted this morning (yep, that would be the much-discussed fatigue everyone talks about post brain surgery...)
Had tea with my parents before they took off to run some errands; then asked Willie to take me "on the road!" I very carefully went up and down our road a couple of times before venturing out onto Rt. 206 for a quick jaunt. All highway lines stayed in focus and I felt cautiously confident. I even managed to park directly between the lines at the local mini-mall - a big event! I am not ready for much more that a quick trip at this point - still have some problems if I turn my head too fast; and the dry eye is very distracting. However, if I need to run somewhere local, I am good to go! So. that was today's milestone.
Willie decided to host the Moms for a late lunch/early dinner today - so he set about preparing a rotisseried chicken, baked acorn squash, sauteed mushrooms and a plentiful green salad with fruits and nuts. Dad served as his sous chef and I must say that the men-folk did a wonderful job! Mom, Willie's mom, Loretta and I enjoyed a wonderful meal - and I allowed myself to be waited on hand and food (no easy task for me!)
Had to take two naps today, however, because I was just so tired. Although I know fatique is part of the whole recovery process, it is quite daunting to have such a total lack of energy. My mind wants to do all these things, but my body just isn't willing. I had hoped to go visit Phil (father in law) in rehab today, but just couldn't have managed it. Sigh.
I am easing back into work tomorrow, only an hour or so. It will be good to feel as if I am returning to some sort of normal activity, even if it is very limited. I also hope to be able to get out and walk a bit tomorrow if the weather isn't rainy. Goals, gotta have goals!
And speaking of goals, yesterday I took two little walks and had company for about an hour (Kura, Lynn and Karen made the trip out from the city - wonderful medicine for me!)
More later...
I woke up totally exhausted this morning (yep, that would be the much-discussed fatigue everyone talks about post brain surgery...)
Had tea with my parents before they took off to run some errands; then asked Willie to take me "on the road!" I very carefully went up and down our road a couple of times before venturing out onto Rt. 206 for a quick jaunt. All highway lines stayed in focus and I felt cautiously confident. I even managed to park directly between the lines at the local mini-mall - a big event! I am not ready for much more that a quick trip at this point - still have some problems if I turn my head too fast; and the dry eye is very distracting. However, if I need to run somewhere local, I am good to go! So. that was today's milestone.
Willie decided to host the Moms for a late lunch/early dinner today - so he set about preparing a rotisseried chicken, baked acorn squash, sauteed mushrooms and a plentiful green salad with fruits and nuts. Dad served as his sous chef and I must say that the men-folk did a wonderful job! Mom, Willie's mom, Loretta and I enjoyed a wonderful meal - and I allowed myself to be waited on hand and food (no easy task for me!)
Had to take two naps today, however, because I was just so tired. Although I know fatique is part of the whole recovery process, it is quite daunting to have such a total lack of energy. My mind wants to do all these things, but my body just isn't willing. I had hoped to go visit Phil (father in law) in rehab today, but just couldn't have managed it. Sigh.
I am easing back into work tomorrow, only an hour or so. It will be good to feel as if I am returning to some sort of normal activity, even if it is very limited. I also hope to be able to get out and walk a bit tomorrow if the weather isn't rainy. Goals, gotta have goals!
And speaking of goals, yesterday I took two little walks and had company for about an hour (Kura, Lynn and Karen made the trip out from the city - wonderful medicine for me!)
More later...
Friday, May 9, 2008
Stitchless in New Jersey!
A Red Banner Day!!
We were up at the crack of dawn and on the road to NYC by 7:30 AM - in the rain. We being me, Willie, mom and dad. Took us a couple of hours to get in, but the really cool thing was that I experienced ZERO (zip, nada) dizziness or disequilibrium (one of my fancy new words - like it?) during the drip!
Got to the hospital parking lot, where the attendant directed us about halfway down the ramp. (Stay with me on this - I'm about to make a pointl...) I launch myself from the car with gusto - right up until I by brain realizes that I am NOT on a flat surface - eek! I grabbed the car and mom until I could get my wits about me, then proceeded with extreme caution up the ramp and into the hospital front doors (with my armed guard protecting my flanks.) I'm sure it was quite a site.
We were a little early, so stopped at the Starbucks kiosk for a coffee - my first public event, complete with lots of ambient noise (the enemy of my people, the Single Side Deafies.) All systems go, although I will caution myself against ordering hot beverages in public again for awhile. Apparently the numbess in my mouth causes me not to realize something is hot until it reaches my throat - well, you can imagine how that turns out.
Off to the Surgeons office to be "de-sutured." He was very pleased with his work - and with my progress. Stitches (both head and belly) came out without a problem. I had armed Willie with a list of questions, so while the sutures were flying out, the questions were flying equally fast. Good thing Dr. Roland is a brain surgeon and able to multi-task with aplomb. The hightlights - because I am not having the balance issues that everyone expected, I have the green light to try a short driving expedition this weekend (Willie will be sitting beside me, fully clenched and ready to pounce.) Dr. R also feels like my face may resolve sooner than the expected 5 months or so. He will see me again in about 3 weeks for an assessment and will refer me to a facial physical therapist as needed at that time. Numerous other little things, but all positive!
The next big accomplishment of the day (see, I told you this was a Red Banner Day, didn't I?) was lunch IN PUBLIC! We went to IHOP (yes, Willie's favorite) where I selected the multi grain pancakes as being the safest option. Good choice, as I was able to get them into small bites with no mishaps along the way - only disappointment was that all of the syrup tasted weird to me (I think maybe the tongue numbness is affecting how I taste sweet things...) There was a big group sitting right next to us for awhile that was VERY noisy, so I got to experience that aspect of SSD for the first time. Didn't much like it. It is SO hard to hear when there is background noise. However, I'll give it some time to see if it gets easier - and in the meantime, I'm sure I'll drive everyone crazy saying "what?" all the time. sigh.
Once home, it was time for a little nap - up and feeling ready for almost anything now (okay, that's probably a slight exageration, but I do feel pretty darned good!)
More later...
Deb
We were up at the crack of dawn and on the road to NYC by 7:30 AM - in the rain. We being me, Willie, mom and dad. Took us a couple of hours to get in, but the really cool thing was that I experienced ZERO (zip, nada) dizziness or disequilibrium (one of my fancy new words - like it?) during the drip!
Got to the hospital parking lot, where the attendant directed us about halfway down the ramp. (Stay with me on this - I'm about to make a pointl...) I launch myself from the car with gusto - right up until I by brain realizes that I am NOT on a flat surface - eek! I grabbed the car and mom until I could get my wits about me, then proceeded with extreme caution up the ramp and into the hospital front doors (with my armed guard protecting my flanks.) I'm sure it was quite a site.
We were a little early, so stopped at the Starbucks kiosk for a coffee - my first public event, complete with lots of ambient noise (the enemy of my people, the Single Side Deafies.) All systems go, although I will caution myself against ordering hot beverages in public again for awhile. Apparently the numbess in my mouth causes me not to realize something is hot until it reaches my throat - well, you can imagine how that turns out.
Off to the Surgeons office to be "de-sutured." He was very pleased with his work - and with my progress. Stitches (both head and belly) came out without a problem. I had armed Willie with a list of questions, so while the sutures were flying out, the questions were flying equally fast. Good thing Dr. Roland is a brain surgeon and able to multi-task with aplomb. The hightlights - because I am not having the balance issues that everyone expected, I have the green light to try a short driving expedition this weekend (Willie will be sitting beside me, fully clenched and ready to pounce.) Dr. R also feels like my face may resolve sooner than the expected 5 months or so. He will see me again in about 3 weeks for an assessment and will refer me to a facial physical therapist as needed at that time. Numerous other little things, but all positive!
The next big accomplishment of the day (see, I told you this was a Red Banner Day, didn't I?) was lunch IN PUBLIC! We went to IHOP (yes, Willie's favorite) where I selected the multi grain pancakes as being the safest option. Good choice, as I was able to get them into small bites with no mishaps along the way - only disappointment was that all of the syrup tasted weird to me (I think maybe the tongue numbness is affecting how I taste sweet things...) There was a big group sitting right next to us for awhile that was VERY noisy, so I got to experience that aspect of SSD for the first time. Didn't much like it. It is SO hard to hear when there is background noise. However, I'll give it some time to see if it gets easier - and in the meantime, I'm sure I'll drive everyone crazy saying "what?" all the time. sigh.
Once home, it was time for a little nap - up and feeling ready for almost anything now (okay, that's probably a slight exageration, but I do feel pretty darned good!)
More later...
Deb
Thursday, May 8, 2008
Photos...
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Well, folks, here are some of the much-awaited pics ....
My fancy Easter Bonnet, me leading the charge into surgery (that's me with the blue poofy hat and lovely gown!) and a picture of my stitches. Not my finest hour, but way better than I expected!
Wednesday, May 7, 2008
One Week Post Op...
Another beautiful day in NJ - warm, sunny, low humidity - a perfect day to try my first sortie down to the end of the driveway, accompanied by Mom and Carrie! I was victorious!! I celebrated by sitting out on the patio on our glider chair --- swinging. I wasn't at all sure if I would be able to handle the swinging motion, but it was no problem, and actually quite soothing.
In the category of more milestones - I also shampooed my hair and showered without ANY help today. Of course, I had to sit and rest for a few minutes afterward... Amazing how every little thing just wears me out.
Mom made another wonderful meal last night of green beans, sauted Kale, and a dish with butternut squash and nuts. Not sure why I am craving veggies so much, but I just can't seem to get enough of them right now. Good thing I'm not craving chips or something equally bad!
During dinner last night, Willie mentioned that he had heard from Dr. Golfinos assistant today to find out how I was doing (which I thought was odd since I talked to her just the day before...)
He had us all at rapt attention ... said that she was questioning him about me showering unassisted -said that she put him on hold - when she came back, she told him that Dr. G said I shouldn't take unassisted showers for at least a year... after a moment of stunned silence at the dinner table, we all burst out laughing!! Willie totally got us - hook, line and sinker. He is still smirking at how thoroughly he had us on the hook!
Tomorrow, I am going to try to download and sort thru the pictures from the hospital. Depending on how brave I feel, I will probably try to post one or two "post" photos here - brace yourselves! Between the festive head-dress/turban, the swollen face, and the crooked smile, it will be quite a site!
Thanks for the cards, notes, and well wishes - it all helps!!
Debbi
In the category of more milestones - I also shampooed my hair and showered without ANY help today. Of course, I had to sit and rest for a few minutes afterward... Amazing how every little thing just wears me out.
Mom made another wonderful meal last night of green beans, sauted Kale, and a dish with butternut squash and nuts. Not sure why I am craving veggies so much, but I just can't seem to get enough of them right now. Good thing I'm not craving chips or something equally bad!
During dinner last night, Willie mentioned that he had heard from Dr. Golfinos assistant today to find out how I was doing (which I thought was odd since I talked to her just the day before...)
He had us all at rapt attention ... said that she was questioning him about me showering unassisted -said that she put him on hold - when she came back, she told him that Dr. G said I shouldn't take unassisted showers for at least a year... after a moment of stunned silence at the dinner table, we all burst out laughing!! Willie totally got us - hook, line and sinker. He is still smirking at how thoroughly he had us on the hook!
Tomorrow, I am going to try to download and sort thru the pictures from the hospital. Depending on how brave I feel, I will probably try to post one or two "post" photos here - brace yourselves! Between the festive head-dress/turban, the swollen face, and the crooked smile, it will be quite a site!
Thanks for the cards, notes, and well wishes - it all helps!!
Debbi
Monday, May 5, 2008
Day 5 Post Op
Still hard to believe that I had brain surgery a mere 5 days ago! I slept about 10 hours last night, which was bliss. Managed another shower this morning, assisted by Willie, of course. More of the hair goo is gone - this has become my mission!
More success with cereal this morning too - isn't amazing how the littlest things feel like big victories! My appetite is coming back, which also great. I've been munching on dried fruit during the day - seems that the only things that really appeal to me are very healthy stuff - guess my body knows what it is doing.
My big highlight for today was going out into the driveway and onto the patio. Sat out and enjoyed the sun for awhile with my mom - very therepeutic. The driveway is very sloped, so I had to go verrrryyy slowly so as not to fall over - I'm sure I look like someone who has had way too much to drink at times!
One of my surgeons called to check in on me this morning - seems they are pleased with the progress, but he also took care to remind me that I need to heel. He scheduled me to come into NYU this Friday to have my sutures on my head and belly removed - yay!!! He'll also do an assessment on my facial nerve, too. He told me again that the nerve monitors they had attached to me during surgery were constantly testing that nerve and that it does not have permanent damage - my particular case will just be a matter of time and patience (which you know I'm not that good at!)
I'll be seeing the other surgeon the first week of June for another assessment and follow up. Looks like I'll be having regular follow up with this team for about 5 more years; at a minimum this will be annual brain MRIs. As long as they have the valium, I'll stick my head in that dreaded machine!
Made and received several phone calls today - very nice talking to people. Also nice to hear that my ability to speak clearly has not been impacted by the palsy - yay!!
Hey Tom and Claire - very funny about the escargot! Yes, wouldn't that be a fright?? (Not to mention a huge waste.) However, I'll take you up on it when I can fully enjoy the experience. And, Tammie - yes, sushi will be great just as soon as I can master this whole chewing thing a bit better.
Thanks again for all the support and good wishes (and offers of food!)
Debbi
More success with cereal this morning too - isn't amazing how the littlest things feel like big victories! My appetite is coming back, which also great. I've been munching on dried fruit during the day - seems that the only things that really appeal to me are very healthy stuff - guess my body knows what it is doing.
My big highlight for today was going out into the driveway and onto the patio. Sat out and enjoyed the sun for awhile with my mom - very therepeutic. The driveway is very sloped, so I had to go verrrryyy slowly so as not to fall over - I'm sure I look like someone who has had way too much to drink at times!
One of my surgeons called to check in on me this morning - seems they are pleased with the progress, but he also took care to remind me that I need to heel. He scheduled me to come into NYU this Friday to have my sutures on my head and belly removed - yay!!! He'll also do an assessment on my facial nerve, too. He told me again that the nerve monitors they had attached to me during surgery were constantly testing that nerve and that it does not have permanent damage - my particular case will just be a matter of time and patience (which you know I'm not that good at!)
I'll be seeing the other surgeon the first week of June for another assessment and follow up. Looks like I'll be having regular follow up with this team for about 5 more years; at a minimum this will be annual brain MRIs. As long as they have the valium, I'll stick my head in that dreaded machine!
Made and received several phone calls today - very nice talking to people. Also nice to hear that my ability to speak clearly has not been impacted by the palsy - yay!!
Hey Tom and Claire - very funny about the escargot! Yes, wouldn't that be a fright?? (Not to mention a huge waste.) However, I'll take you up on it when I can fully enjoy the experience. And, Tammie - yes, sushi will be great just as soon as I can master this whole chewing thing a bit better.
Thanks again for all the support and good wishes (and offers of food!)
Debbi
Sunday, May 4, 2008
Home and Resting!!
Well, I was "sprung" from NYU yesterday morning at about 10 AM - only about 76 hours from check-in! Really amazed that I was able to come home so soon. It was primarily because I was able to keep food down and get up and move around - that seems to be kind of the measuring stick as to whether you're well enough to come home - well, that and the other little details like BP and heart rate and other stuff...
The surgery ran a little longer than the family was anticipating, but about what the surgeon suggested at between 5 and 6 hours. I, of course, was blissfully unaware. The bliss ended rather abruptly when the woke me up in the OR in order to "cough out" the breathing tube - immediately followed by an urgent need to throw up!
Spent the entire night in the Recovery Room (no beds in Neuro ICU because some other brain surgery patient didn't apparently get out in time - clearly needs to toughen up a bit!) The RR is like a full body ER episode - complete with lots of noise, machines, trauma, etc. They were literally bringing people in all night - amazing. This, coupled with pretty intense head pain for me, meant pretty much no sleep all night. I was being tended by a neuro nurse - she had me and the other AN surgery patient from the day all to herself. Through-out the night, she checked stats, tested relfexes, gave meds, etc - lovely young woman. I was treated to a very nice "bath" at 2 AM - it felt good to be cleaned up a little.
Next day I was moved, at about 3 PM, to a Post Surgical ICU step-down room, which meant that a couple of my IVs were removed and also the catheter (at 1 AM - which is odd.) Next morning, before 8 AM , they moved me down the hall to a regular room. I was able to get up and walk to the bathroom - a huge event, believe me! By later that day, I was given the "all clear" to take a walk around the halls with Willie in attendance.
It was lovely having Mom, Dad, Willie, Kura and Ellen coming in and out and visiting me - and continuing to tell me I looked great (even though that was FAR from true!)
The biggest good surprise for me was that I seem to be escaping the extreme dizziness and imbalance issues that so many folks have. I walk very slowly, but my balance is okay for the most part.
The bad news is that my face is "numb" which is akind way of saying I have temporary palsy on my right side. So what does that mean? I have a very lopsided smile and a slightly droopy right eye. Eating is a bit challenging because I can't really operate the right side of my mouth - and things tend to not stay in my mouth if I am not careful. Soup was a complete disaster, as was rice (although both good for a few laughs!) The cheerios this morning were actually manageable!
The big question, of course, is how long the palsy will last - could be a couple of months, could be more like 5 or 6 months. No way to tell yet. So, everyone will have to adjust to my "pirate smile" for awhile.
I'll post some pics in the next few days - so you can all see my stunning headress from the hospital! It was like a giant,very tight turban - guess they needed it to make sure the skull actually stayed together! It was a huge relief when they took it off yesterday - literally felt like a giant tight headband had been removed - totally great!
I enjoyed my first shower and shampoo today - it was heaven! It wore me out, but worth every moment. You can't imagine how wonderful it was to get some of the crud off my hair! They only shaved a small inch long strip alongside my ear, but the remaining hair was "varnished" to the side of my head with something very much like cement. It will take several shampoos to get it all out, but at least I got a good start on it. And, the good news is that my hair completely covers the giant incision on the side of my head. Let's just hope it distracts somewhat from my asymetrical face!
More later - thanks for the comments and emails.
The surgery ran a little longer than the family was anticipating, but about what the surgeon suggested at between 5 and 6 hours. I, of course, was blissfully unaware. The bliss ended rather abruptly when the woke me up in the OR in order to "cough out" the breathing tube - immediately followed by an urgent need to throw up!
Spent the entire night in the Recovery Room (no beds in Neuro ICU because some other brain surgery patient didn't apparently get out in time - clearly needs to toughen up a bit!) The RR is like a full body ER episode - complete with lots of noise, machines, trauma, etc. They were literally bringing people in all night - amazing. This, coupled with pretty intense head pain for me, meant pretty much no sleep all night. I was being tended by a neuro nurse - she had me and the other AN surgery patient from the day all to herself. Through-out the night, she checked stats, tested relfexes, gave meds, etc - lovely young woman. I was treated to a very nice "bath" at 2 AM - it felt good to be cleaned up a little.
Next day I was moved, at about 3 PM, to a Post Surgical ICU step-down room, which meant that a couple of my IVs were removed and also the catheter (at 1 AM - which is odd.) Next morning, before 8 AM , they moved me down the hall to a regular room. I was able to get up and walk to the bathroom - a huge event, believe me! By later that day, I was given the "all clear" to take a walk around the halls with Willie in attendance.
It was lovely having Mom, Dad, Willie, Kura and Ellen coming in and out and visiting me - and continuing to tell me I looked great (even though that was FAR from true!)
The biggest good surprise for me was that I seem to be escaping the extreme dizziness and imbalance issues that so many folks have. I walk very slowly, but my balance is okay for the most part.
The bad news is that my face is "numb" which is akind way of saying I have temporary palsy on my right side. So what does that mean? I have a very lopsided smile and a slightly droopy right eye. Eating is a bit challenging because I can't really operate the right side of my mouth - and things tend to not stay in my mouth if I am not careful. Soup was a complete disaster, as was rice (although both good for a few laughs!) The cheerios this morning were actually manageable!
The big question, of course, is how long the palsy will last - could be a couple of months, could be more like 5 or 6 months. No way to tell yet. So, everyone will have to adjust to my "pirate smile" for awhile.
I'll post some pics in the next few days - so you can all see my stunning headress from the hospital! It was like a giant,very tight turban - guess they needed it to make sure the skull actually stayed together! It was a huge relief when they took it off yesterday - literally felt like a giant tight headband had been removed - totally great!
I enjoyed my first shower and shampoo today - it was heaven! It wore me out, but worth every moment. You can't imagine how wonderful it was to get some of the crud off my hair! They only shaved a small inch long strip alongside my ear, but the remaining hair was "varnished" to the side of my head with something very much like cement. It will take several shampoos to get it all out, but at least I got a good start on it. And, the good news is that my hair completely covers the giant incision on the side of my head. Let's just hope it distracts somewhat from my asymetrical face!
More later - thanks for the comments and emails.
Friday, May 2, 2008
Willie here…2:45pm 5/2 (Friday)
Well, it’s post Ethel-ectomy +1.5 days and Deb’s progress continues to be outstanding. She’s received her official NYU frequent traveler card as she’s on her 3rd different room as of this morning. It appears she’s progressing so well, they’ve decided to disconnect all lines & tubes and now placed her in a semi-private room without any monitoring devices. She’s starting to eat solid food again and is able to get up and walk to the bathroom, and will be attempting a walk through the hallway in a matter of minutes, albeit with some help. My guess is she doesn’t really need the help, but she’s a giver and trying to help us feel useful. OK, maybe not useful as much as provide a soft landing should she suddenly take a header.
Last night, Debbi shared her hospital bed with me and settled in to watch a little TV. About 15 minutes into it, she noticed that the bed was getting very wet. Now, I know our incontinent dog was about 60 miles away, so we quickly searched for the source to find that the little pee tube had decoupled and provided a very colorful cascading waterfall. It would have really looked cool if somehow we could have affixed a gargoyle to the end, but we took comfort in knowing that they were out scaring little children.
Dr. G. stopped by today and echoed what we knew – she’s making great progress and could possibly go home tomorrow. In fact, they’ve already removed her belly dressing and plan on taking off the head dressing (hat) tomorrow. Belly dressing you say? Yep, while she was here, she decided to have some liposuction – not that she needed it. Actually, it seems that they use the belly fat to fill the void left behind. I brought some GE Tub & Bath silicone joint filler, but it only had a warranty of 20 years; whereas not unlike butt fat, belly fat appears to last forever.
Debbi remains in great spirits and the numerous calls, visits and posts continue to be an inspiration to all of us.
Willie
Well, it’s post Ethel-ectomy +1.5 days and Deb’s progress continues to be outstanding. She’s received her official NYU frequent traveler card as she’s on her 3rd different room as of this morning. It appears she’s progressing so well, they’ve decided to disconnect all lines & tubes and now placed her in a semi-private room without any monitoring devices. She’s starting to eat solid food again and is able to get up and walk to the bathroom, and will be attempting a walk through the hallway in a matter of minutes, albeit with some help. My guess is she doesn’t really need the help, but she’s a giver and trying to help us feel useful. OK, maybe not useful as much as provide a soft landing should she suddenly take a header.
Last night, Debbi shared her hospital bed with me and settled in to watch a little TV. About 15 minutes into it, she noticed that the bed was getting very wet. Now, I know our incontinent dog was about 60 miles away, so we quickly searched for the source to find that the little pee tube had decoupled and provided a very colorful cascading waterfall. It would have really looked cool if somehow we could have affixed a gargoyle to the end, but we took comfort in knowing that they were out scaring little children.
Dr. G. stopped by today and echoed what we knew – she’s making great progress and could possibly go home tomorrow. In fact, they’ve already removed her belly dressing and plan on taking off the head dressing (hat) tomorrow. Belly dressing you say? Yep, while she was here, she decided to have some liposuction – not that she needed it. Actually, it seems that they use the belly fat to fill the void left behind. I brought some GE Tub & Bath silicone joint filler, but it only had a warranty of 20 years; whereas not unlike butt fat, belly fat appears to last forever.
Debbi remains in great spirits and the numerous calls, visits and posts continue to be an inspiration to all of us.
Willie
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