6 month checkup

So we went to New York for the 6 month follow up. Exhausting as anything is. We flew JetBlue to JFK. Direct flight was nice. Enterprise Rent-a-Car not having a hand control vehicle was not. The Enterprise trauma was long and boring, I'll limit the retelling to the fact that it took them 4 cars over 3 days to sort things out properly.

Had a new MRI at MDI on the 3rd and then saw the new neuro @ TCI on Friday and saw Dr. Bolognese. Got to see Lisa & Theresa and a few other people and talked on the phone to Denise when she called Dr. B during my appointment. Everyone is really happy about my progress.

The general attitude is that I hit the lottery as far as results go. Best possible and then some. I am trying to just celebrate that. I am happy about it really. Can't help but be frustrated about the continuing symptoms tho.

But back to the appointment. I'm going to have a few more tests and there are some things still going on, but they are really happy with how the surgery went and how I have healed up from it. My neck is still in spasm and they're having me up the Flexeril, which the pain clinic took me off. Pituitary gland hasn't gone back to normal shape, but won't worry about that for another 6 months. At that point if I'm still having headaches and nausea we'll do another CSF compliance test and take steps if necessary. They want me to continue following the Infectious Disease path, seeing if it is the cause of some of my symptoms.

Their initial presentation of the connection of EDS (Ehlers-Danlos Syndrome) and Chiari Malformation is available on the TCI site now.

I got to meet Eliza finally, which was cool. We went to dinner in the lower east side and got to catch up a bit in person. It was really fab to get to meet her!

Our docs are in heavy rotation on the Discovery Health Channel's 'Mystery Diagnosis' talking about Chiari Malformations, Ehlers-Danlos Syndrome and the like.

Good grief...

I can't seem to keep on top of myself. I've been so headachey and nauseated the whole past week. I've managed to basically eat some rice or applesauce or vegetable broth every day and drink some tea. Then today I wake up and I feel fine. I started sleeping with a soft collar on. I don't know if that is helping, but it seems to. I've started trying to curl up in my sleep which includes trying to curl my head forward/down. I think that was a huge part of the ouch. I'm being so pillow specific, I'm afraid we're going to have to drag one with us to NY. I'm going to TCI again the 1st week of November for my 6 month follow up. I can't believe it is 6 months already. Wow. I cut and colored my hair again for the first time. (I don't have any hair over the scar area, so I was only coloring the half mohawk on top of my head.) I felt better emotionally. Hair is such a funny thing. I'm doing a presentation about my artwork to a panel from the Alameda County Art Commission and the Juvenile Detention Center on Monday. Oh. That's tomorrow. I better go work on it and write more here later.

Surviving...but Ow!

I'm almost off the dilaudid. That rocks. Realizing that my pain management was still pretty dependent on it though. I feel like there are holes in the Kadian treatment. And of course am not at home. My partner has a solo art show opening in Kansas City (secret center of the art universe) on the 2nd. We are driving there. I'm slowing things down. We usually are in Ft Collins by night 2 and we are outside of Rawlins, WY. I hate hate hate wearing the aspen collar for 10+ hours a day. Other than that I'm hanging in there. I was told by many people that they didn't drive after surgery, and that part I am not having any trouble with. I drove 4 hours today. It doesn't seem to be any more tiring to drive or be a passenger when it is all interstate driving. We are having to hit hotels instead of car camping. I just can't figure out how to curl up in the van yet. Fortunately we built in an extra drive day not knowing how I would do. Gas is so expensive that we are going to be staying in the midwest for the month the show is up. Makes for a long time on the road.

If any of you are in KC area you should come to the opening on Sept 2 (http://www.eliotkdaughtry.com/robotcity/).

Hole in the info

So obviously...looking at the gapping hole in the space between the Cervical Xray post and the waking up post. That the methadone was still WAY sucking and I moved to taking Kadian, which helped quite a bit. None the less there was just a whole lot going on in my body...cuz I don't sleep 20 hours a day naturally. We'll see tomorrow who I'm going to be seeing at the pain clinic.

Waking up

I woke up on Friday. I think I literally had been sleeping almost 20 hours a day. I figure it was the fab combo of my system starting to kick the anesthesia out, withdrawal from some hard ass drugs, and just needing to sleep through some of the healing. So I'm down to about 10mg/day of Dilaudid & on Kadian...which doesn't seem too bad. Amazing how long the pain lasts though. I quit the clonidine which they give you to help with the withdrawal. I think that helped some. I'm taking as little flexeril as possible now too...usually about 1 a day. I don't really have much to say as after a couple of truly crappy weeks I am just starting to be up and around. Things are going well at this point I think. I'm making slow progress on the physical front, but it is progress and the docs said to plan for a year of recovery, so...I think I'm on schedule. It is really nice to feel half way human.

Oh, I do have something. I'm driving. I asked quite a few people who had more or less the same surgery how they felt about driving after surgery. Almost everyone said eek eek bad no good almost never not like-y, etc. I have to say that I am having a fine time driving. I have to turn at the shoulders or waist to see the right side mirror, but the rear view and left side are fine just using my eyes (switching from glasses to contacts was key though). I'm of course wearing a cervical collar. I had someone with me the first several times I drove to be a spotter of sorts...basically to call me out if I wasn't seeing things or was about to do something horrible. Nothin'. So there you go. If any of you are about to get yourself wrapped up in this sort of surgery, here's one vote for driving being ok afterward. My suspicion is that it depends on your comfort with driving pre-surgery. I LOVE to drive. I HATE to be a passenger. Surgery has taught me some tolerance for being a passenger, but hasn't dampened my love for driving. I'm driving myself to physical therapy and to doctors appointments. I'm running a couple of errands here and there. It kicks my ass and I have to come home and nap, but...progress none the less.

Speaking of progress. I actually went out to visit some friends the other night. Another thing that kicked my ass, but we parked about half a block from our friend's house...I walked in (did I mention that I walked in!) I can make it about half a block and that's pretty much it...we hung out for a couple of hours and then I felt like a big ole 2 year old. I was just done. Needed to go home right then. Ah well. More napping for me.

Cervical Xrays at (roughly) 3 month mark

So I got my cervical spine xrays done yesterday at the same time I was getting a chest xray and blood tests.
You can see them (hot off the press) here:

http://killerbanshee.com/family/medical/cervicalxrays.html

It is so, umm...real to see it in black and white like that. It was pretty amazing to see.
Funny that one can post their xrays before they even get to the doctor in some instances these days.

So I was on a crazy round to all the doctors over the last few days cuz I was feeling like complete crap. I was sure it was due to the methadone and me having a bad reaction to it. Physical therapy people and my primary were worried it could be a UTI or the flu that is going around, so they wanted to check. I peed in a cup. Got a CBC panel & a chest xray. All clear. I went to the Pain Clinic. My doctor was out of town. Thank goodness. I feel like we speak to completely different languages. Eliot and I both ask him to re-explain things when we're in the office and leave looking at eachother with big questionmarks over our heads. I don't know what it is. Makes me crazy. Like he said he'd give me a prescription for clonidine patches. I asked what are they for? He said to take with the methadone to offset the effects. I asked if it was really necessary, what would it specifically help? I didn't get a clear answer. I asked if it was available in pills because I tend to have scars from adhesives left on more than a day or so. He said ok. I should have checked the prescription, I know. Eliot pages me from the pharmacy and says it is for patches. Ack. So I didn't use them and left a message for my doctor about it. Didn't hear back. So back to the fact that we were at the pain clinic and he wasn't. I explained to the doctor I was seeing instead what all I was taking. I told him my symptoms...difficulty breathing, restlessness, weird constipation/diarrhea combo, drowsiness, decreased appetite, dry mouth, weakness, profuse sweating, muscle spasms, tremors, restless sleep, twitching, back and leg pain, spiking fevers, very fatigued, difficulty urinating, joint pain in all joints...he said it was for sure due to withdrawal from dilaudid. I asked if it was possibly due to the methadone. He said that wouldn't be it because I was taking clonidine for that. I said that I wasn't and that I had left a messasge for my doctor about that. He got all wound up and went and got the head doctor of the clinic. They talked me through what was going on, adjusted my dosages with the methadone and actually got me the prescription for clonidine in pills (took 3 times explaining to them that every medical adhesive I've had on my person for more than 2 days has left a scar). We went home and got the new prescriptions. They set a time for me to come in on Monday. What a difference between this treatment and the odd behavior of the person I regularly see! Any suggestions on how to change doctors within a group?

Amazing how much better I felt this morning. Still not amazing, but as good as I had been feeling before starting the decrease of the dilaudid/addition of methadone. And for those of you out there that have had these surgeries, how quickly did you come off narcotics all together? Did you change from a short to long acting one in the process? They are telling me that I might be on pain killers for a few more months, I didn't think I'd be on them that long, but I'm not sure what is usual.

Well, I better get some shut eye. Enjoy the pix.

Hmmm...MacJournal has an blogger post feature

Just noticed it in the custom menus, so we'll try it.

I feel like crap. Been feeling less than stellar for a few weeks as I've noted. Still waiting for test results on the main feeling like crud theory.

Now, on top of it I'm feeling even more crappy. No appetite. Fluish. Loss of appetite. Tired. Sleepy. Exhausted. Dry dry dry mouth & throat. Thirsty all the time. Super fatigued. Sweating buckets. Enough to have to change my clothes multiple times a day. I'm popping more fevers. Many of these are lasting longer than the usual ones which go up to 101.9 or so. These are only going to 99.x and last a couple of hours and then I go back down to something around 97.7. I'm having urgency about needing to pee. Then it is difficult to pee. (Did a UTI pee test just in case, nope.) I'm still having a systemic behavior that is like constipation, but what is coming out is more like diarrhea. The joint pain is terrible...hips, knees and ankles worst, then elbows, shoulders & wrists. I'm achy all over. I'm feeling much cloudier, like I can't think. Bleh. I'm going to see the pain clinic docs tomorrow. I've just stopped a moment to prepare myself for that tomorrow and the withdrawal of the dilaudid combined with the side effects I seem to be having with the methadone is probably the reason for it. I'm going to ask them if we can try something other than methadone for the long term. I can get through the dilaudid withdrawal if I know that is what it is.

What else. Not much cuz I've been so freakin tired and sleepy that I've not been able to. I've gotta rearrange my sleeping area too, cuz I've woken up in terrible positions a couple of times with my head partially turned and all that. I think it is time to stop sleeping on my devided pillow and go back to a regular one. I'm going to go back to sleep now.

Visiting with my mom

Been a bit quiet cuz my mom came for a visit. That took pretty much all of my energy for the last week. It was great though. My cousin Chellie and her husband and kids came down for 2 of the days. We mostly stayed around the compound, but mom went with me to my new physical therapist. (Yes, I finally got rid of the other one!) The new ones are great. Everyone agrees. It is a perfect fit. They do feldenkrais among other approaches. I like them, mom likes them, Eliot likes them. They like me. Woo hoo.
Mom helped garden, she helped clean, she helped cook. It was really nice. We spent a lot of time on the patio cuz Chellie's husband John is allergic to cats. It was a very nice weekend though. Mom and I taught Chellie and her daughter Haley to knit. I set mom up with her new iBook. I'm still having a lot of pain. Transitioning from dilaudid to methadone slowly. Got some good support shoes to work on walking in. I'm getting some tests done to follow up on the antibiotics thing, but don't know anything for sure yet. And in another 10 days I'll be getting my 3 month Xrays!
More about the physical therapy and stuff a little later. I gotta leave for an appointment now.

is it the antibiotics?

My energy feels like it is slipping. I'm more tired, less clear headed and really feeling pretty weak. The weak part I'm hoping is just part of going from no shape to getting in better shape and building my strength. I was horrified at physical therapy the other day that I collapsed. My legs, just like they used to, went to jelly and refused to hold me up. Frack! I am really pissed off about it. Of course it made my physical therapist go in the completely other direction and not want to let me do anything at therapy. She wants to know if I'm hypoglycemic. No. My legs are trying to do their old tricks. But WHY? she wants to know. Well, that is the question isn't it. Of course she thinks it is impossible to have legs that don't support you and not know why. They recovered after a 4hour nap, but I've been feeling a bit wibbly since. So back to the question...is it the antibiotics? Every time I take megadoses of antibiotics I feel great for about 4-6 weeks. Every time I take a regular course of antibiotics I feel great for a week or 2. It is bizarre.

More about this after I've done some reading. Looking forward to input from those of you reading as well.

Physical therapists...as hard to find as a therapist?

I've been to the new physical therapy happening 3 times so far this week. First time for intake and a little heat/tens unit action on my neck. 2nd time in the pool (shallow enough not to immerse my neck)...walking back and forth and backwards and forth and doing some stretching. 3rd time was today. I'm telling myself 2 appointments with someone isn't enough to form an opinion, but I'm feeling very torn. I like this place. They focus on pilates based physical therapy and water therapy. The physical therapist isn't trusting anything I tell her. If it isn't in writing from the doctor it isn't fact. I'm annoyed at the fact that I'm supposed to harass my doctor to put everything in writing that they've told me. I'm trying to keep in mind that she doesn't know me and thus doesn't know that I'm going to struggle not to do to much, not fight to not do anything. So some of it I've gotten in writing to close the discussion, some I'm still formulating. My doctors (I'm talking at least 3 different doctors independently here) are counseling patience and taking my time in building up strength and endurance and not overdo it. The physical therapist is saying not to bring my wheelchair into physical therapy and that I should just walk and that she's going to have me walking at least 4 blocks within weeks. Personally I like the latter, but seeing my recovery thus far and knowing that I've been in a wheelchair full time for 10 years am finding the prior to be more realistic.
Hmph.

Anyway, have any of you used a walker? Did you use a 3 wheel or 4 wheel model? What did you like? Why?

And if you haven't seen it (cuz it didn't publish for some reason) check out the posting form may 17.
'nite.

Where o where is Kriss...

I'm a little over a month out of surgery now. This week has probably been the roughest since I got out of the hospital. I can't seem to figure out how to manage the bowel issues that come with being on narcotics. I've tried laxatives/softeners (of various sorts and in various combinations). I've tried adding in more fiber on top of those. The only thing that works at all realistically is an enema, though a suppository has worked on a couple of occasions, but usually left me manually helping it along (ack). My primary gave me a script for Miralax today. We'll see how that goes.

I've also had a lot more pain this week. I guess just another point in the healing process. I had moved out to the more usual 6mg dilaudid every 4 hours instead of every 3 hours and was just miserable. I was seen at the pain clinic in SF this week, but there are a lot of hoops to jump through before they'll change anything, so I am waiting to get seen by one of their psychologists...so last night I switched back to every 3 hours and feel somewhat human today, other than the sleepus interuptus of taking medication every 3 hours. The other pain addition of this week is the onset of bursitis. Mainly in my hips, from not having used them for so long (about 10 years) and suddenly being using them in a somewhat normal manner.

It is interesting that my inability to walk was due to the cranial settling, not the MS. I swear, it is so bizarre, but I can walk like there was nothing ever wrong...other than on the endurance front of course. I would say that post surgery I am probably rid of about half of my symptoms. Not that it isn't leaving me with plenty of health crap to deal with, but it brings it back into a managable range, instead of a staring at the giant abyss of health falling apart. It is being terribly difficult to adjust to the non-movable neck though. It moves JUST enough to make me wonder if I'm doing something bad to it...which is a couple of degrees.

I HAVE to deal with the glasses this week though. Since I can't move my head I need to learn to use my peripheral vision and I have tiny little glasses that leave all of that in the fuzzy fuzzy land. Oh oh...and I am no 5'2" tall!!! That is almost 2 inches taller than I was before surgery! I guess my cranium had settled A LONG ways!

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

5.35AM and not a drop to sleep

Argh. Another night awake. I so need my relaxation sleep chill out chill out. I've been off a bunch of meds (including NSAIDs) since the 21st and I am trying to handle more pain than I can really manage. Chin up (gotta enjoy it while I can!). Stop whinging. I am doing ok for the most part, the lack of sleep is getting to me though.

At least tonight when nary a wink is in site I'm alert enough to get some things done.

My MedicAlert bracelet came this week. The new perma telegram I have to wear on my person reads:
NEEDS FIBER OPTICS. STOP.
CERVICAL FUSION. STOP.
ASTHMA. STOP.
EHLERS-DANLOS SYNDROME. STOP.
NO LATEX, IODINE. STOP.

Is that really the most important things? I don't know. I went around and around with the MedicAlert peops. EMTs don't usually give Phenergan in the field. Hope not. Anaphylaxis sucks. I figure the MedicAlert thang is another one of those 'if you have it done, taken care of, in place...you won't ever need it' type things. Better safe than sorry.

Still trying to get ye-ole health insurance to deal with the appeal. The fact that I'm having surgery in 9 days is not cause for an expidited appeal in their view.

The list for tomorrow before we fly to New York is daunting. I better try again to sleep. 'nite

Procrastinating Appeals

So here I am procrastinating from working on the appeal I am writing to my HMO. They are (of course) denying coverage for anything that approaches REAL care. The saddest part of that being that even though I live in a major metro area, and have ever since I have been dealing with major medical issues, I can't find doctors that actually sort anything out where I live. So I HAVE to go 2,927 miles east to find specialists that understand what is going on with my body. What part of piles of doctors, lots of tests, lots of $$$, no answers, bad treatment and mental anguish=local. One specialist unit, some tests, in the end a lot less $$$, some real freakin answers=out of town specialists can't they understand? Oh, right. Medical justification only. Let me lay it out real easy for you. One line appeal.

It will cost you less money to do it this way.

So here I am writing justifications to a pile of mental arguments that I can hear the appeals board coming up with, trying to answer any and all arguments in a single letter. Of course these arguments each require a lot of research since I am suddenly dealing with a lot of issues that I know only a little about.

Searches bring me to more interesting things to read (like Ghetto River Nymph's blog) which distracts me into responding to her, which distracts me into setting up my own blog. What was I doing? Oh, right.