Half way between the 2 & 3 week mark...

...and I'm feeling half way human. Still at a point where I'm in a lot of pain if I am late for a pain pill. They said I wouldn't be feeling too great without them for the first month. I'm having a lot of muscle spasms and sticking close to the schedule for relaxants as well. I'm starting to feel more acclimated to the position of my head though. And the incision is feeling a little less raw. I'll have Eliot take some more pix of it today. Our friends are being great about coming around as we need things. Cleo and Juba came and helped garden yesterday and Leslie Mah picked up groceries for us. Eliot seems to be doing quite well. He's got a lot of art shows coming up and I'm only needing a medium level of help...finding getting water from the dispenser difficult, and I need help with things like running a shallow bath. Other than that it quite honestly isn't a lot more than he was already having to do for me on a daily basis (sadly...cuz it points out how much help I was needing day to day before surgery). The good thing is that when I'm fully recovered I should be able to go back to doing a more equal portion in the house. And I'm feeling well enough to be up and around and working on the computer for half an hour or so at a time, which means I can stay on top of the bills and stuff. It helps a lot to be over the thrush and infection-e stuff. I feel like my recovery is going really well. I can tell already it is going to become a challenge to remember not to lift things very quickly. I can't thank you all enough for all the positive energy. I feel so lucky to be getting the best of what we could hope for from this surgery thus far.

Home home home

We are home. I'm having a very painful day. Things are very owie today. I'm moving slowly. Having to deal with putting out some fires on the day to day management front at the Compound. Funny how those things refuse to politely wait while you feel like ouch ouch. I don't feel too blechy other than that though, so that is still making me happy. I can't get over how little of the overwhelming fatigue I'm feeling. That fatigue has been my constant nemesis, almost ALMOST never relenting for most of the last 10 years. Not to say that I'm feeling particularly energetic yet mind you. I know that anyone who has never dealt with a chronic, debilitating level of fatigue that can hardly be described, can probably not understand exactly what this is like...but let me tell you, just being tired and worn out from travel and anesthesia and surgery and pain, is SO MUCH LESS overwhelming than the normal fatigue I've had for so long.

The back of my head is looking less like a scary crusty mess (labeled to be looking like cat poop by some). It is an interesting thing, the changes made in recent years in how the healing of wounds is handled. They've finally noticed that our bodies are usually the most efficient at keeping things sterile and cared for while healing. So now, intead of flushing a surgical wound and scrubbing it out a zillion times a day, you now don't touch it. You let your body handle it. What a concept. So my body is doing its job and the cut down the back of my head is looking better and better. It also minimizes the scar supposedly, so we'll see.

Now everyone that has ever been asked to flush a wound 3-5 times a day can wonder what their scar would look like if they hadn't. I know my mom and I were discussing that right away!

Love to all. I'm hanging in there. Thanks for your thoughts and energy.
Kriss

fortune...ate

Eliot ran across a fortune of mine from dinner a few nights ago while he was packing...

You will come to realizations
in you life that change
you forever.

Needless to say I ate the cookie.

Head for the hills

Hello all. It is 10.40EDT on the 17th and we're finishing up packing to head for Oakland. I'm relieved to be going home to my own bed, though I'm endlessly grateful to Neil & Pamela & Lucy for sharing their home with us. It was good to be in a cozy environment while I struggled to get myself sorted post surgery. The thrush is starting to get under control, though my throat is still a mess. Swish and swallowing yucky stuff. Got the staples out yesterday. Nice to be rid of those. You can now see pix of surgery from the main site. The link directly to the pics is here. I'm feeling slightly human this morning, which is good cuz I know I won't by the time we hit Oakland tonight. Better to start out feeling decent. Eliot is packing since I cannot lift stuff.

I still think it was a mistake for them to release me from the hospital on Friday between the infection/thrush and my digestive system not yet functioning fully, but I know the nurses seemed to be up in arms about dealing with the fragrance allergic asthma response stuff. I still don't understand a hospital that will allow that kind of stuff in the first place. When I am feeling better I will be taking on that issue with the hospital there and seeing if I can get them to create a policy for the hospital as a whole.

I'm still not eating much. It is hard to swallow and I've not got much of an appetite. I have plenty of room for some loss of poundage though, so it isn't dire. I'm making sure to eat things that are good, such as miso and rice noodles.

I don't fully understand the NO flowers in any ICU room either. That was a big downer to have to spend so much time in such a sterile room. Though the fold out toilet was pretty funny. It folded into a cupboard. There are pictures on the site.

More from the West side.
xo
Kriss

Owww.

I am at our friend Neil's. It is so much pain. I've been discarged for a few hours. (It being 8am and they let see let me out about 8pm last night.) I am very convinced at the moment it was a bad ida.

I'm having a terrible time makng my hands hit the keys. They are hitting all of the wrong, keys. I'll leave an exmple back in here: thriat bery sore, I ssems like all of th epople an dtruo[ss un frong of

They are very hot to the touch. My fever started at 99.3F when I woke up due to pain and lack o sleep. An hour later I was at 102.2F. My hands feel like I'm burning. My head feels like I've got a hell of a fever. My mouth feels raw and painful. My throat is so unbelieivably sore I can't even compare it to something. I can't hardly swallow. I'm holding plenty still.

Bolognese called me after I paged the service. He wasn't pleased that I had been released, called in some Cipro which I need to go pick up. He is hoping 'just a UTI'. The wound looks good. I just had Eliot take a glamourous tour around the inside of my mouth and I have several open sores in my throat that I would assume are thrush. Waiting for call# 2 from Dr. on call...ah, yes...Thrush, among other plesant bits, I'm now on Cipro and Nystatin among other things. Bleh. Hopefully my throat and mouth will quit hurting though.

This is one of the most miserable days I've spent. I think I probably should have stayed in the hospital and Dr B didn't sound too convinced I should have been released from the hospital either. There were some of the personnel I was having to deal with that were making me nuts though~

Anywho. We'll get some pix up in the nxt couple of days. We're probably at Neil and Pamela's until Monday night or Tuesday morning. We fly home Tuesday. In the mean time I'm going to sleep, take drugs and sleep.

The incision looks really good I hve to say, from the photos Eliot has taken of me.The breeze over my face that is coming through the window is very lovely. I'll go back to the hospital to get the staples out on Monday. Before 1pm. I'lm hoping I'll feel better then.

Spinning and losing toucvh with consciousness.
xo
Kriss

Thursday becomes Friday

Things today started with Kriss calling me early in the morning to please come over to the hospital right away. Shift change brought with it a nurse that did not get along with Kriss, and who did not keep anything resembling civil comportment with her. This led to a couple of hours of discussion with the doctoring staff, as well as a meeting with one of the nurse managers at the next shift change.

A couple of the folks that are on the Chiari email list that Kriss is a part of were having procedures done this week as well, and we met one of them tonight. Kriss walked around the corner to Konnie's room and I brought the wheelchair. We chatted with her and her husband for a while and then went back to Kriss' room.

The evening began well, but Kriss has developed a sore throat and was running a fever. Hopefully this is just a result of her talking more today than she has been, and not a strep or something of that nature.

It would be really great to get out of the hospital in the morning.

delayed release

Kriss will be kept until tomorrow morning (Friday). I'll post more about today later.

Eliot

Out of NSICU and onto the main floor

So, things continue here. Denise, the PA, is hoping to discharge Kriss in the morning, partially because she is doing well, and partially because of the ongoing respitory problems. At 4pm Kriss got moved from the NSICU unit and onto the main floor, as there were other patients who needed the ICU space. At least it is a private room.

We got a good, if brief, session with the physical therapist, Amy. She showed both of us a couple of different ways to deal with getting Kriss out of a sitting position safely. She also coached Kriss on get up / lay down technique. Short walks are going well, and Kriss walked part of the way down the hallway (on crutches) to the new room with Amy, finishing the journey in the wheelchair.

The staff on the main floor has been pleasant, and up to the point I left the hospital at 12:45am, fairly fragrance free. Only one incident thusfar. Knock on wood that it continues that smoothly.

Pain management (such a corporate type term that only an MBA could have come up with) continues to be a major problem. Surgery hurts. Even with the high level of pain, and a fairly high level of medication, Kriss is remarkably lucid. I can't say I'd be as eloquent in describing what was going on as she is being.

Kriss is happy to have flowers in her room finally, just in time for her to probably be discharged :)

So, hopefully, the next update to the log here will be from Kriss, even if it is brief.

best to all,
Eliot

Day 6- perfumeland in the NSICU

First I do want to thank everyone who has left messages and sent email. Please know that it really helps our spirits that so many folks are sending quick messages, and that I am relaying everything I can keep in my pea brain to Kriss. I'm trying to get mail downloaded for her to look at tomorrow. It is not looking likely that she will be released now until friday or possibly saturday.

Second, I'm going to vent a moment on the subject of public fragrance. Since Kriss has trouble with fragrances, cleaning solvents, and a handful of other things that cause her asthma to flair, a sign was posted on the door to her room. While it has cut down on people entering the room while perfumed to the gills, Kriss has used her inhaler more in the last 3 days than in the prior last 2 months. Please remember this is an intensive care unit she is in, not a regular hospital room. Access is more restricted, and there are fewer patients for each of the nurses. One of the main reasons she has not been moved to the main floor is because of the inability for the staff to control what visitors wear in terms of fragrance/deoderant/aftershave, etc. While Kriss was lucky last time to have a great roommate, that might not be the case this time. So while this is supposed to helping, we are finding that the staff are some of the worst offenders.

Most hospitals enforce employees not using scented products, and most certainly do not alow anything likely to cause respitory distress to patients. Unfortunately, there does not seem to be a policy about this at North Shore University Hospital. I cannot begin to express how frustrating this is for Kriss, and for me. I'm not that sensitive to a lot of products used for personal hygiene, or personal expression. I was taught that perfume was for your lover, husband, wife, and intimates, not for the person at the end of the hall. But since everything must now have an odor, a "fresh scent" or whatever the pinhead marketing department thinks up next, we all must suffer the olfactory assault. I'm surprised more people don't have problems with all the unneeded chemicals added into everyday things. Things that show up a lot in hospitals, where people who are ill, recovering and otherwise don't need extra aggravation. I'd much rather smell someone's real body odor than all the other crap. It doesn't make my mouth taste like metal, and it doesn't make Kriss' air passages swell shut.

End of sermon about inappropriate fragrance.

Kriss had first visitors today. Our friends Lea and Spencer came by for the late afternoon visiting time, which was very exciting!

Lengthy meeting this morning on pain management and dosages.

Dr Bolognese was by for a while, and he and Denise, the PA, discussed removal of the surgical staples on Monday.

Kriss walked all the way down the hall using crutches, but we did not try another walk in the evening because the perfume level in the hall was too strong to get her safely out of the room.

Kriss resumed knitting for a bit tonight, and her appetite is improving, even thought she's still having a lot of nausea.

There's a lot more I could report, but that's all I can muster for now.

Eliot

Day 5 continues in NSICU

Kriss continues to improve. The morning saw a brief visit from Dr Bolognese, the first physical therapist visit, and bathroom visits (bedpans be gone!).Parts of the day were rough, punctuated with a great cacophany of medical professionals that came and went in an endless stream from the room midday.
She is off of the PCA unit, so now she has to request pain meds instead of self administering. The pain specialist sent to take her off the unit failed to tell us that is what what happening until it was too late for Kriss to do a final push. They were supposed to wait until after replacement of her IV lock, which was causing her a lot of pain, and the person who attempted in the morning couldn't hit a vein. Finally the IV lock did get replaced by a specialist around 3pm.
Kriss was also fitted with an Aspen collar, to help support her neck while she is moving about and upright, both of which happened more frequently today.
Denise, the main person from TCI we have been working with at the hospital, wants to keep Kriss in the ICU until she is discharged from the hospital, which may be as early as wednesday. They are concerned with even more problems with asthmatic attacks if she gets moved to the main floor, so as long as they don't need the room for someone coming out of surgery, etc, she will remain in ICU.
I took a couple of pictures of the back of Kriss' head which I'll attempt to post on our website.

Eliot

Sunday in NSICU from Eliot

Well,

Kriss did not have a good night last night. The CPAP was not working well enough as she had a nosebleed and was too congested afterwords to breathe through her nose. So she got put back on oxygen, and if things don't go well tonight, the respitory dept will bring up a bipap, which forces oxygen along with the postive air pressure.

When I arrived this morning her catheter had been removed and she was up in the lazyboy again. Makes me wonder if the hospital regimen could take into account that we are both nocturnal and that it isn't normal for either of us to be awake, much less doing any activity at 7 am.

She's complaining of nightmares, likely from the painkillers.

The nausea problem is making it hard for her to eat, and I'm having a hard time getting her to drink enough, much less eat.

Hopefully tomorrow she will be doing well enough to move to a regular room, so she can have flowers.

Day 3 from Eliot

I walked into the NSICU this morning, and Kriss was sitting up in the hospital version of a lazy boy lounger. This is good! Still, she was very ready to be horizontal when the required time was done.

We discovered that Amy's Dinners have changed the ingredients to include freakin' WALNUTs in one of the frozen dinners that the dietary department ordered special for Kriss. This triggered a review of the entire line that they got in for Kriss to eat. I ended up making a trip to the Whole Foods closest to the hospital, which for those familiar with both the Food Ho, and with the Bezerkely Bowl in the Bay Area, well, think B Bowl on steroids directed by Woody Allen. We've stashed a couple of frozen items for mealtime in the ICU mini dorm fridge down the hall.

All considered, Kriss ate at least a little solid food today. Not much, but some. We are getting better cooperation on working the diet out here than any other hospital we've dealt with over the years. It still isn't good enough dammit.

We switched Kriss over to her CPAP machine to sleep tonight as her breathing has been quite ragged when she is sleeping. I hope that it helps her sleep better.

Eliot

2nd day Report

Eliot apologizes to everyone who has left messages that have not been returned yet. I'll do my best to return all calls that I have not thus far between visits with Kriss. My cell phone only works intermittently in the room at the Variety House.

Kriss was moved from PACU (post anesthesia care unit) to the NSICU (neuroscience intensive care unit) around 3:30pm today. Because of her history of reactive airway (asthma) problems, and her overall sensitivities to anasthetics, the respirator equipment wasn't removed until around 10:00am. So it looks like Kriss will be in NSICU until Sunday, and most likely moving into a regular room on Monday.

Tomorrow the doctors want to get her sitting up, and want her to use the chair, and if she can handle it, her crutches. She is oozing a bit from the zipper-like incision/staple closure on the back of her head. We will start an icing routine to help the swelling on her neck tomorrow.

If you are thinking about sending flowers, which Kriss loves, she can't have them in the room until she is out of NSICU. And, it is likely that since Kriss is now a day behind the best scenario stay, she will probably not be released until friday next. Of course, this could change at any time.

anyway, that's what's up now.

Update from Eliot about Surgery

Hi all,

This is Eliot masquerading as Kriss.
After 8 hours of surgery, the docs came out and said that things went well, with no complications. They did however, keep Kriss in the Post Anesthesia Care Unit overnight.
I was allowed to see her twice, and she wrote a couple of hard to read notes (can't talk with a tube down the throat still).
Tomorrow they should move her into a room, so no room number yet.
Sorry if this is abrupt; I'm not much of a writer.......

Eliot

T-6 and counting

In 6 hours we'll be on our way over to the hospital for surgery. I'm excited about what's to come. I'm just not thinking about the recovery in front of me right now and focusing only on the surgery and how successful it is going to be and how I will go through it easily. My partner is very stressed. I'm pretty stressed too, but feeling prepared. Food tonight was a struggle. This hotel sucks, as do most of them it seems. Why is it so hard to make a hotel room accessible? It isn't I swear. Just think, and if you can't think then sit in a chair and try to reach things. I won't bore you with all of the details here, but I'll rant about the accessibility further at some point soon.
I just wanted to let you know, friends and family, that I love all of you and appreciate so much the great support and energy we are receiving and will be receiving.
See you on the other side. Keep up your chants, visualizations, positive energy and communications with your diety(ies). Know that you've done something great to help me.
And we'll focus on lots of long hikes in our futures.
Love to all.
Kriss