The Whole Story
since 9 October 2000
Monday, 9 October
1 - 8 October, Week in Review: Mette began the week feeling sick. No, not from PSC. She was sniffling, and coughing, and feeling generally "poorly". She was home from work Monday, Tuesday and Wednesday with the plain old "cold/flu/crud". Thursday she was back at it with a vengeance and Friday she went in at 1430 for a "night shift" and wound up working straight until four in the morning. Saturday morning she came home and laid around all day (no surprise there). But, Sunday was just another work day around the house. She almost finished painting the wood shed, stacked some more fire wood and took a whip to me until I did everything she told me to do.
Saturday, 18 November (Posted 0915)
9 October - 17 November Review:
I hardly know where to start. The situation was looking so good, she was getting more and more strength, returning to her old ways, etc and then...
I didn't keep track because it was just one thing after another. She had the flu and missed several days work. Then she had this horrible back pain (still does) and missed some work. And then she had a bacterial cholangitis attack--that is where the reduced flow of bile out of the liver has allowed the bile to "hang around" long enough that it causes an infection. The infection, of course, makes one have a fever and feel generally lousy. Most folks have a LOT more pain than Mette did with her first bacterial cholangitis attack--for that, we are grateful. And, now that Mette has had one (its just something we have to expect to happen, over and over) we know what to look for. So, from now on, at the first rise in fever that has that special kinda pain in the liver area--we take Miss Mette to the hospital and they hook her up to massive quantities of antibiotics to drip into her arm. And in a few days the episode will be over.
Which was the case a couple of weeks ago. But then, a few days later the back pain was so awful she went back into the hospital...and, then a few days later started having jaundice (eyes and skin yellowed). A day or two of that at the Horsens Hospital and they kicked her back to the Århus Kommunehospital and the care of Dr. Rokkjær.
Which is where we are now. I'm typing this in the Patient Hotel. Thursday Mette had a percutaneous transhepatic cholangiogram (PTC) which is where they punch a hole in the abdominal wall, through the skin of course, and snake around inside with a catheter (guided by an untrasound) until they get into the correct spot inside the liver where they then push in a contrast solution and then take x-rays of the structure of the liver. Which, showed that the right half of Mette's liver appeared to be functioning normally, but the left half had been blocked and backed up. The exact cause for the blockage was not found and a pathway for next weeks procedures was left in place.
Right now she has lost almost all her yellow color and feels a bit better than last week--though she now has a drain tube following her around. Next week they will do a CT scan and then, depending on what they learn there will install a more permanent drain from the bad side of the liver to the gut, or they might go in with a balloon and blow it up to open up the now restricted gall duct, so it drains properly. Or, maybe they do both--time will tell.
So, I kept waiting for good news to put on this page and I guess I just got tired of waiting.
Tuesday, 21 November (Posted 0815 UPDATED 1325 and 1730)
- The antibiotics did their thing, and she became fever free sometime Sunday.
- The painblockers are working too, and she now has relatively little pain.
- They decided to give her two units of blood to help overcome the anemia...but, she had one today and will have the other on Wednesday..
- Mette had a CT scan on Monday, we got the results at 1130 today:
- the scan showed that she has several areas inside the liver in which the liver cells have died due to insufficient blood flow..
- the lack of blood flow is caused by the restriction in the portal vein (which is the main blood supply for the liver)
- remember (see summary), that vein had been involved with the cancer which began in the gall bladder--and, during the operation in July a section of one wall of the vein was cut away, thereby leaving a smaller vessel..
- Dr. Rokkjær said that usually in this kind of case the patient body grows new pathways for the missing blood supply, and once enough blood is available the damaged portions of the liver regenerate rather quickly..
- he said this is probably a matter of "weeks" in recovery (something Mette was not at all happy to hear..)
- Our roles have reversed: Mette used to always see things in a better light than I did...now I often find myself being the optimist. She is very tired of all of this..
Wednesday, 22 November (Posted 1415 UPDATED 2130)
- She slept well over night..
- But, she threw up every meal she had yesterday..
- And was sick again this morning..and had no breakfast..
- The doctor made his rounds around 1100 and noted her blood work was looking better today..
- We talked about the nausea and he said they would focus on that..
- I left the room at 1300 and she had not had lunch..
- She ate a good dinner, and as of 2100 (end of visiting hours) it was still in her stomach..
- We had a session with the hospital Priest today..it has brought a welcomed level of calm and clarity..
Thursday, 23 November (Posted 1945)
- She said she had a good night's sleep..
- and, a pretty good breakfast..
- the "feel good doctor" spent some more time scratching his head pondering Mette's back pain..and around noon decided to see if he could pinpoint a spot where could block the muscle pains in her back..
- and he gave her a shot in each cheek..which brought pure pain relief..
- but I don't know for how long, because I left around 1300..
- and drove to Hosby, where Molly and I are gonna pretend everything is alright for a few days (Mette decided I needed a break--and she was right--usually is don't you know)..
- Mette's mom is gonna take over the Århus vigil for a few days (though Mette is pretty sure she is old enough, and strong enough, to go it alone for a few days)..
- well, its only been a few hours and already I'm thinking up real good reasons to have to drive back up there tomorrow--even if only for a couple hour visit..
Friday, 24 November (Posted 2200)
I talked to her on the phone and learned:
- slept well, but the back pain shot ran out and the BAD pain returned..
- therefore, had a really bad morning with no breakfast and very little for lunch..
- but, two more pain blocking shots (one in each cheek) and she was a "new woman" by mid-afternoon..
- had a good dinner and decided she was better today than yesterday..
- we are therefore thankful for the progress..
- tomorrow I'll drive mormor up to visit for a few hours..
Monday, 27 November (Posted 0810 UPDATED 1910)
I talked with Mette on the phone a couple of times yesterday:
- she had some back pain early in the day, but a shot took care of it
- her mom went to the Cross Cafe (in downtown Århus) and bought Mette's lunch
- Mette said it was very good
- overall, it was a good day
- there was progress
And, I've talked with Mette and her mom a couple of times today:
- slept well Sunday night
- had a good breakfast, lunch (left overs from yesterday's the downtown cafe meal) and dinner
- physical therapist gave her an in bed work out (for the back muscle pain)
- (for the first time in a long time) she got out of bed and went out into the hallway to pick out her own dinner from the food wagon!
- she has another liver xray tomorrow, but it should be a no pain procedure since the catheter to place contrast in the liver is already in place
- Mette's mom is going to stay there until after the procedure is complete, then she will return to her home
- and, depending on the need I'll either go there tomorrow afternoon, or maybe Wednesday morning
- they scheduled a CT scan for late in the week
- from the here activity I beleive we have progress, albeit slow..
- the xray tomorrow and CT scan later (when compared to those of the last two weeks) will tell the tale, for sure..
- crossed fingers, best thoughts, fervent prayers, solemn meditation and secret incantations are all welcome..
Wednesday, 29 November (Posted 1330)
I drove back up yesterday, and walked into Mette's room about 1600:
- she had not had a good day
- she had had quite a bit of back pain and had had almost no food all day
- the plan to do another x-ray of the inside of the liver failed because the catheter had unknowingly slipped out of place and the contrast solution didn't go where it was intended
- I thought she had fever when I first touched her, but she assured she did not
- at 1800 I asked the nurse to take her temp and, guess what, she had fever
- the doctor was called, blood work was reviewed and it was decided that Mette was just beginning her second bacterial cholangitis attack
- they started an IV drip of bug killer and Mette had a light dinner..
She asked me to be in her room at 0800 this morning (Wednesday) but I overslept--the Patient Hotel is a good place to sleep (or eat)--so I arrived at 0830:
- slept well but woke up around 0100 and had a sandwich (that is good news)
- she had no breakfast because she was fasting in prep for an ultrasound (looking for infection--the source of the fever)
- no infection was found, and anyway her temperature was normal this morning (the doctor said they must have picked exactly the right antibody to knock out the attack, near instantly--he went on to say sometimes it is good to be lucky!)
- she had good lunch and was on her way to dream land when I left the room (no visitors during nap period, 1220-1430)
- her mom returned to Guld yesterdat and will care for Miss Molly until I return home (when?)
- when not with Mette I'll be staying with friends a little out of Århus
- so, updates might not be so often..live with it!
- more later
Wednesday, 29 November (Posted 1330--but, this contains info through Sunday 3 Dec..)
After the mid-day nap on Wednesday:
- a nice afternoon with no pain (and no pain shots)--this is real progress
- the Priest (Pia Sundbøll [eMail:vilbat@mail1.stofanet.dk] of Skt. Johannes Kirke) stopped by again--what a nice lady--helpful, caring, reassuring, etc..a blessing for us
- and two colleagues from Horsen's surgery came by with gifts, Christmas snacks and smiles..
- when it was time for dinner she turned her nose up at what the hospital food wagon offered and sent me down the street to the Chinese Take Out--this is REAL progress
- and, she didn't fall asleep during an hour and a half of her favorite Wednesday night TV programs (Room Service and Ally)--this is REAL!! PROGRESS..
Thursday, 30 November: I spent last night with Birgitte and Henrik (tusin tak) in Beder (about 15 minutes from the hospital--its an hour to drive home or 250 kroner to stay in the Patient Hotel, and not nearly as cosy) and:
- arrived at Mette's bed just before 0800--she asked me to be there early to accompany her to todays 'procedure' in which they will reposition the out of place catheter which precluded the planned x-ray last Monday (now rescheduled for next Monday)
- wrong! I wrote that around 0900, and Dr. Rokkjær told me around 1000 they intended to do several things during the 'procedure' today:
- reposition the catheter (using ultrasound)
- inject contrast for another percutaneous transhepatic cholangiogram (PTC) [x-ray of the liver]
- and, maybe blow up a balloon in one of the internal bile ducts, to open a wider path
- they did all that and also made a new, small incision and inserted a plastic tube to drain the fluid and protein accumulated in the peritoneal cavity (abdomen), a condition called ascites (caused by the circulatory disruption in the left half of her liver)
- the entire 'procedure' took about an hour, finishing around 1230
- by 1400 a liter or more of fluid had drained out (via the newly placed tube)
- as Dr. Rokkjær saw the amount of drainage I asked him what it was and he replied "beer"--I said "Its not my brand, but I could get you a glass."--which brought a big grin to his face. I spend a lot of time trying to lighten the situation a little; I know it irritates some (including Mette) but I find it less irritating (to me, and everyone) than crying--which is what I usually feel like doing
- he explained to Mette that the drainage is a good thing: the fluid is better out of the system than in
- he also said that the x-ray today, and ultrasound yesterday, confirmed that the liver is busy repairing itself..new pathways for venial blood flow have (and continue to) form--this is crucial so the liver can move out the non-functioning cells and regenerate
- by the time visitors began rolling in she had shaken off most of the sleepiness (they knocked her completely out to do the PTC) and was mostly smiles
- but, nothing on the menu sounded good--she finally (and reluctantly) ordered a bowl of soup..which she immediately wanted removed from bedside as the smell caused her to be nauseous
- when I left for the evening (2100 the big mean nurse with the prize fighter's nose kicks everyone out) she had not asked for any food--so, she was fasting until the procedure and then had nothing but three glasses of milk by 2100
- on another front: Jan (the anesthesiologist who put Mette under for the multi-hour surgery on 5 July) spent another half hour or so by the bed discussing with Mette which way to go on fighting the back pain
- one of the things discussed was that just about every drug on the shelf in Denmark had be tried, with little success
- but, some may not have had a "fair chance" since they were cast aside with only a 24 hour trial..
- so, he is gonna start over by picking the one he feels is most likely to quell the pain and combat the muscle inflammation: Vioxx
- the plan is to try to stick with this drug a few days to give it a "fair chance" to prove, or disprove its ability to work for Mette
- maybe a supplemental pain block will be given just to get through the first day as some of these drugs depend on accumulating a certain minimum level pervasive in the system
- (if any of that sounded like I know what I'm reporting, it was pure accident!)
Friday, 1 December (Happy Birthday to David): I spent another night with Birgitte and Henrik (tusin tak igen). Henrik and David have the same birthday and I was invited to Henrik's party tonight--tusin tak mange gang!
- she slept well and had a small breakfast
- after the PTC Thursday, the small tube used as the pathway for the procedure had been capped off after the larger drain had be placed--but, this morning the bandage over that site was saturated with yuck, which was unexpected and somewhat unsettling--by day's end it had drained about a half liter or pure bile (and two different doctor's had assured us that TWO drains draining is a wonderful thing IF you need them, and she does--and, the drainage will taper off with time)
- the physical therapist applied heat packs and gave some mild stretching exercises--that and the new pain/anti-inflammatory meds seem to be working..at least, she didn't focus on back pain more than five minutes all day!!
- the morning rounds didn't go so well: the doctor relayed the results from Thursday's PTC--which included the understanding that essentially one half of Mette's liver is not functioning, at all..that side is expected to atrophy and the good side to grow larger
- Mette got to thinking about that and had a long, bad day with lots of fears and worries
- and, well--its a too long story to relay it all right now, but it seems that no one really knows if Mette has primary OR secondary sclerosing cholangitis--the difference is HUGE..if the scarring of the bile ducts inside the liver was caused by the cancer in the external bile duct she HAD secondary sclerosing cholangitis which means that when the current problem is taken care of she should not expect further liver damage--that is quite a different outlook than we have been dealing with since late June
- on the other hand: no one can say if the cancer caused the secondary problem or if the primary sclerosing cholangitis caused (or contributed to, or was simply coincidental with) the external duct/gall bladder cancer--only time can answer the question: if, say in 20 years there has been no more scaring of the liver it will probably be safe to say that it was a secondary affect of the primary problem, the cancer
- at any rate, the new level of the unknown future hit us both pretty hard--which is kinda ironic since the best news we have had in months is the possibility that we are NOT dealing with PCS after this current battle
- Pia (the Priest) made a special trip by the bed (after being called) and spent some very helpful and soothing time with us--tusin tak til De
- when I left the room (after visiting hours) we had both arrived at a new level of coping with the reality of being totally out of control of our environment and future..
Saturday, 2 December:
- I spent another night with our friends in Beder (and joined his birthday dinner for a little while--it was coffee and cake by the time I got there--PERFECT timing!...tusin tak, igen)
- Mette slept well but had no breakfast, instead she was actively nauseated during her shower--but, her "head" was better today than yesterday
- had a bowl of mashed potatoes and gravy for lunch
- slept most of the day--but had a real good time with the afternoon's visitors (Kaj's son Klaus and Birgitte--my hostess for the evening)
- she had a very good evening meal
- when I left she was feeling pretty good and said "I almost feel good.."
Sunday, 3 December:
- I awoke (in Beder again) with the sniffles, stuffed up head, cough, etc etc--a "cold" I guess
- I decided I'd not take that to Mette--that I'd drive home instead
- then I learned that our old BMW (old, but our number one means of transportation) had been struck by a hit-and-run driver over night
- that ruined my day--but, Henrik drove me home (tusin tusin tusin tak) and I got to hug Molly all day (in a COLD house)
- Mette's mom drove up to spend the day and reported that Mette had three good meals and a little snack around 8 at night--this is good news
- and, she reported that Mette was looking and acting much better than when she last saw her
- oh, and around 1800 Birgitte called to report that the hit-and-run driver had called and provided his name, address and telephone number--so, tomorrow I think its just a matter of getting in touch with his insurance company--that is a load off my mind
- so, what started as a real looser of a day turned out okay after all
- tomorrow Mette is scheduled for another CT scan (I think I figured out why there are so many scans going on right now: they are very concerned that an abscess might form in the half of the liver with the bad blood flow--and, they want to be right on top of it if that happens--I'm not sure I know how they will deal with it if antibiotics don't knock out the infection--but, I guess they might go in an cut out the bad if they have too
- I'll be at home until this cold is gone..for sure she doesn't need that on top of her other problems
- and for all you out there who care: now is not the time to give up on sending positive vibes to Denmark..
Monday - Tuesday, 4 - 5 December (Posted 2045 Tuesday)
I'm still at home with my cold, so I don't have constant access to information to pass along. But:
- Mette's mom visited for most of the day both days (and almost all this information is from her--we talk several times a day)
- Mette is quite weak and not eating very well--nausea is often a problem and they have switched medications to try and fight it better
- Dr. Rokkjær and Mette had a long talk on Tuesday and he assured her that she IS making progress, though slow--(daily blood tests confirm the progress) and:
- don't let anyone "push" her to eat if she doesn't feel like it
- same for the gobs of pills lined up in front of her every meal (she should take them if possible, but not if its gonna be a struggle which causes nausea)
- she needs more rest--all she can get: so, for now the number of visitors will be limited and each should plan on only a short visit (five or ten minutes)--NOTE: this is NOT a signal that she is getting worse, just that she is not getting better as fast as she could if she didn't have so many friends to entertain!
- that said, she DID get a little stronger on both Monday and Tuesday--it was especially noticeable in her voice around dinner time on Tuesday
- the back pain continues to not be so bad
- Sunday night the CT scan (that was expected on Monday) was rescheduled for Tuesday--we will have those results Wednesday
Wednesday, 6 December (Posted 2200)
I'm still at home with my cold but I'll visit Mette tomorrow (more on that later)
- I talked to Mette on the phone around ten this morning and she said she had a "fantastic" night's sleep, and went on to say that she didn't remember waking up all night long!!
- but, she had very little breakfast because of nausea
- Dr. Rokkjær went over the results of yesterday's CT scan and said:
- new blood paths are not forming as fast as he had hoped they would
- there is some concern about the right kidney and its environment (lots of fluid around it)
- to ensure its continued smooth operation she will travel to a nearby hospital tomorrow for a "procedure" to insert a stent between the right kidney and her bladder--one of her favorite nurses will go along to offer support and MAKE SURE she get's all the "happy juice" she needs to face these things (it is said that surgical nurses are one of the worst to operate on--they just seem to always think up the worst possible scenarios)
- Dr. Rokkjær extended an invitation to Mette's mom and me to come in tomorrow and get first hand information about the "procedure" and its results--Inger can't make it so I'll go in and get the details and call her
- I intend to ask the kind doctor if he thinks I'm non-contagious enough to be with Mette for a while after she returns--sure hope he says yes since I have not held her hand since Saturday
- depending on what the doctor says, and Mette's "mood" after the "procedure" I'll return home to Molly or stay closer to Århus
Thursday, 7 December (Posted 2100)
I met Dr. Rokkjær on the ward while Mette was at the other hospital, and we talked:
- as the door closed I asked if he had any good news, and he answered "not really"
- the CT scan this Tuesday was almost exactly like the one two weeks ago--he said he had expected some improvement; he had expected to see new veins begin forming to feed the liver nutrient rich blood from the intestines (normally the "job" of the portal vein--the one which was involved with the cancer and had to be cut/repaired)
- he said he had expected to see the "bad" half of the liver getting smaller and the other to grow a little larger--but neither had happened
- as we talked I learned that either I was mislead, misinformed or simply misunderstood (probably the latter): I had been under the impression that the portal blood flow had been compromised in one side of the liver only--today he told me that there is no venial flow to the liver at all, the liver is living from arterial flow only--a condition he pointed out is not so uncommon in these kind of cases, AND it is a condition that can sustain life
- I asked him point blank if this is a hopeless situation and he answered that it is not and noted that the liver is doing what it is supposed to do, just not very well; her blood work is not so very bad and she looks good; and he mentioned again that the liver is healthy enough for her to live
- I asked him if he expects the liver will repair itself as he had said last week, and he answered something like "maybe it will, but very very slowly" and I asked "or, maybe it won't?" and he answered that the liver as is will sustain life
- I said "if the liver does not regenerate it will sustain a rather poor quality of life" and he said "it is an unfortunate condition"
- and I pressed him again, "is it hopeless" and his answer was quick, direct and authoritative, "No."
- he told me that he and Mette had a long discussion yesterday and that Mette is looking for peace, she does not want to be pushed to eat, or with "good ideas" from the Internet--she wants to be the boss and set the pace--and he noted that she IS his boss and he is listening to her..
Now, that was today's early news--let me share some old news, some I've had for weeks but not shared in this venue because there were family members who had not been told (or had been told but didn't accept or try to understand the implications), and I didn't want them learning it second hand "on the Internet":
- as soon as we learned (or thought we had learned) that Mette had PSC (a disease with no cure which almost always results in complete liver failure requiring a transplant) we have been preparing ourselves for that day--the day that Mette's liver will no longer sustain life, or is so close to that that the risks associated with a transplant are eagerly accepted and the transplant occurs..
- its like this: there is no cure for PCS but there IS a way past the inevitable, and that is a transplant
- but, during our first interview with the Internal Medicine folks we learned that Mette is not a candidate for a liver transplant--wow, I was floored
- then, about three weeks ago (after I'd postulated a lot of "what ifs" with folks in my online PSC-Support group) I quizzed Dr. Rokkjær
- is it because of scar tissue etc makes it surgically impossible: no
- the internist mentioned that PSC is known to attack the new liver, is that the reason: no
- is it because of the cancer: yes
- but you said you got all of it: yes, but we are not sure yet
- we will be sure after the PET scan in January: yes but, a transplant requires the patient be administered anti-rejection drugs..those beat down the body's natural defenses against foreign tissue so that the patient will not attack the new liver--and, that beat down defense system also will not attack ANY lingering cancer cells--even those not detectable in a PET scan
- so, he said last week, we have to keep the liver she has working a long time
- so, now the only available liver is either not repairing itself, or so slowly the rate can't be seen in two weeks
- this is not the best news day of my life, that is for sure
- but, by 1500 she is back from the trip across town and I must say she looks better now than when I saw her last, on Saturday evening..so..
- so, if looks has anything to do with it I'm SURE this is not a hopeless situation
Friday - Monday, 8 - 11 December (Posted 1300)
Last Thursday I visited with Mette (after discussing my LACK of symptoms of a cold with her surgeon) and about seven at night my nose began running again, and I returned home. Where I remain, offering pitiful little support or help from here. All the below was learned via a short phone call each day to Mette and from talking with her mom and others who have visited:
- Mette usually sleeps well at night
- she often has nausea to the point that she does not want to eat
- she eats very little but supplements it with the hospitals "protein drink" and lots of different vitamins and minerals via pills and shots
- the nurses chase her out of bed three times daily for a walk up and down the hall
- of the times I talked to her she sounded weakest on Sunday and strongest today (Monday)
- this morning she said (for the first time in days) that she feels pretty good
- she has daily heat packs and physical therapy folks working on her back--she complains MUCH less about pain there--I think they have found a combination of pain relief and therapy which is working
- she continues to have more visitors than she really needs but that is the price of being a wonderful person: all visitors should plan on about a five or ten minute visit until further notice
- on the other hand, Mette played a big part in making this decision with the doctor and therefore has full authority to override her decision: if she asks you to stay longer, don't fight her--but, do watch for signals that she is tired and needs to sleep and then attempt to get away again
- on the other hand (is that three?), if she says she is sleepy after you have been there 5 seconds, you are invited to wait around until she feels like being awake (one of the hallmarks of poor liver fuction (from disease or injury) is fatigue--Mette just does not have the strength to stay awake all day)
- the blood work through Saturday shows a positive trend, from talking to her I expect the results from Sunday and today (which I'll receive by fax later today) will continue that trend (I'll post the new blood work when its received)
Tuesday 12 December (Posted 2000)
- during the evening call last night Mette told me that she had had two good meals, two glasses of "protein drink", feels "pretty good" AND had one of the drains removed--overall, a good day
- Tuesday, was not as good a day--I learned during the evening call tonight
- she spent most of the day sleeping due to the anti-nausea medication they used
- but, she still had enough nausea that she didn't eat much all day
- she did have a meal intravenously and a protein drink but that was about it
- and, instead of walking the halls three times as planned there was only one trip
- My cold/flu was worse than ever yesterday--but today it seems its about over
- If you intend to visit Mette in the hospital, read the information about that on the "Contact Info" page
Wednesday 13 December (Posted 2200)
I'm still home, not so sick today but afraid I'm still contagious. Learned via phone:
- good nights sleep and a very good breakfast (stayed down)
- good lunch too--but then they both came up...sigh
- she did have another intravenous meal
- she told me that the nurses and doctors have a goal to have her home by Christmas--I sure hope they make it..
- If you intend to visit Mette in the hospital, read the information about that on the "Contact Info" page
Thursday 14 December (Posted 2030)
Today, marks four weeks at the Århus Kommunehospital, a place full of people we love, respect and owe a great deal of gratitude
I'm still home. I think I'm still contagious (dripping nose etc)..hope to see her Saturday. Learned via phone:
- good nights sleep and a good breakfast (stayed down)
- good lunch too--and they BOTH stayed down
- she also had another intravenous meal and a protein drink or two between meals
- she walked the halls and had some bed side exercises under the direction of the physical therapist (she said the exercises didn't so long, but that is to be expected since she has done little other than lay down since her last day at work, 25 October--almost two months ago
- both phone calls today were marked with laughter and a real feeling of progress and hope
- If you intend to visit Mette in the hospital, read the information about that on the "Contact Info" page
History's longest flu/cold persists . . . Learned via phone on Friday:
- she called me this morning--that is the FIRST time that has happened in a long long time..
- and she sounded good..and strong (well, relatively speaking of course)
- and she said she had more hope today than she has had in a while--and was looking forward to coming home
- while she did throw up in the morning, she had two good meals that stayed down
- the docs are contemplating using an anti-coagulant therapy to thin the blood--hoping that will initiate or speed the building of an alternate venial blood supply to the liver
- but, before doing that they will feed her the snake again so they can take a look in the esophagus and stomach for any ulcers or "weak" or over pressured veins that might "blow out" if the blood is thinned--the procedure is scheduled for Saturday morning
- our "good night" call was amazing: I had told Mette that I would call around dinner time (1800) because I knew she would be awake then. I called the patient telephone a couple of times but no one answered--I decided not to call the nurse's phone and ask one of them to take the patient phone to Mette's room, because the nurses are so busy with patient feeding. Anyway, about 6:30 the phone rang here--it was Mette, she asked if I had just called the patient phone...I said yes and she said that it was a bit of a struggle but she had gotten OUT OF BED to go answer the phone (out in the hall)...but there was no one there by the time she got it. WOW--I can tell you that shows me an amazing advance in physical and emotional strength--last time I was with her there many times she didn't want to talk on the phone if handed to her!
- I went to bed last night without posting all this good news becuase I just HATE to do that and then the very next day have to report the relapse..
Saturday:
- I called the nurse at 0900 to ask when the snake eating banquet was scheduled..she said "I JUST spoke to Mette about that and was sitting down to call OR." and I asked "How is Mette?" and she said "She looks good." and I said, "No, I mean is she worried about the procedure?" and she made my day: "No! She has a smile on her face."
- I called Mette on the patient phone about 5 minutes later (the kind nurse took the phone in) and a "smiling voice" greeted me--oh, it is so wonderful to hear progress..
- she said she was hungry, and sorry that she had to fast prior to eating the snake...she said her stomach felt like either she had to eat or throw up--we have often postulated that some of her stomach problems may have been induced by the frequency of her needing to fast..
- anyway, that is the report up to now..
- more later..(I sure hope the good news holds out..)
Sunday:
- she had three meals, all stayed down
- her dad took the train to Aarhus and spent the afternoon with her
- she said she didn't get an afternoon nap, and didn't feel rundown
- she was talking about having a bedtime snack when we talked around 8 PM
- my cold is history--I've packed for a week and will be there tomorrow
- she will have an ultra-sound sometime tomorrow and then the best and brightest docs will plan the next move
- If you intend to visit Mette in the hospital, read the information about that on the "Contact Info" page
Monday, 18 December (Posted 0900 Tuesday)
I'm back staying with friends about 15 minutes from the hospital
- she slept well Sunday night, but had no breakfast because she was fasting for another ultrasound scan
- which was completed around 1430, just after I arrived
- she came out of the ultrasound examination room saying she was hungry
- the bed had hardly stopped rolling into its position in Room 3 before she was reaching for the pull string to signal the nurse to her bedside
- the smiling nurse walked in and Mette said "What's on the menu, I'm hungry!" (roughly translated)
- and she ate a good portion of mashed potatoes and meat and gravy
- before she had had two bites a colleague from Horsens walked in to visit
- and then a nurse who used to be at Horsens, but is now next door, dropped in
- she almost finished the plate of food but decided to switch to some protein drink (she had a gall FULL)
- and the visitors left and she asked: "So what have you been doing for two weeks."
- that was about 4:30..as I answered (maybe three minutes into the answer) she said she thought she needed a nap
- which lasted until 8:30..so I wrote her a note to call me if she woke up before 10:00
- which she did, and she said she was thinking about having a little night snack
- folks, she looked a lot better today than she did the last time I saw her
- the doctor, nurses and her are scheming to have her home for Christmas
- probably just one day, but well....that is gonna be good for her, Molly and everyone
- I am CAUTIOUSLY optomistic that progress will reign supreme--if we can just have more progress than setbacks for a while it will be a nice change of pace
- my cold is not exactly history--I coughed all night..I'm gonna get a doctor's opinion before I hang out around Mette a lot more--I am so tired of this cold
- If you intend to visit Mette in the hospital, read the information about that on the "Contact Info" page
Tuesday, 19 December (Posted 2200)
I'm staying with friends (Birgitte and Henrik) about 15 minutes from the hospital
- good nights sleep Monday night
- when I arrived at the hospital around 1000 she was in the shower
- and got out just in time for the delivery of hot packs for her back (not nearly as much pain as before, but still enough to demand attention, and pain medication, etc)
- she told me the doctor had already made rounds for the day and had gone over the plan for her:
- begin the anti-coagulation (blood thinning) medication tomorrow
- try to find a pain management medication not requiring injection--because a non-injection method is preferable if she is at home
- send her home on the 22nd, 23rd, or 24th..
- go to Horsens Hospital daily (at a to be specified time) for a blood test
- the guru's review the results and prescribe the amount of anti-coagulation medication to be taken that evening
- should she begin throwing up blood, call the ambulance..
- should she have a temperature rise, call the hospital for instructions (which will probably be: come on in and let us look)
- receive intensive yellow-dog therapy (that is where Molly stays very near, day and night)
- continue anti-coagulation and yellow-dog therapy until after New Year's day (really...if she is strong enough, etc they want her to stay at home)
- return to Aarhus for ultra-sound/CT scan to determine the next step, which might be (1) attempting to surgically break free/remove blood clots from the larger veins of her liver and/or (2) introduce small veins into strategic spots in the liver with the plan that they grow and improve circulation and/or (3) continue anti-coagulation therapy if that route is proving satisfactory
- all of that is dependent, of course, on her continued near term progress
- she had three relatively good meals and several (I lost count) glasses of protein drink
- she walked he halls twice; sat up in bed and smiled/laughed with guests; and was generally "Mette" all day
- but, let us not be too hasty--nor get hopes too high, for late in the day her temperature started up and she was feeling some pain from the liver area
- and, the pain management via pills just didn't work out today--she had a shot around 5 in the afternoon and was about to request another as I was leaving at 2030..
- therefore, we won't be sending out the welcome-home party invitations until we have more positive signs..
- and, for now the informaion at "Contact Info" should be read if you intend to visit Mette in the hospital
Wednesday, 20 December (Posted 0900 Thursday)
I'm staying with friends (Birgitte and Henrik) about 15 minutes from the hospital
- she lost dinner after I left Tuesday night
- when I arrived Wednesday there was a conference of two doctors, the ward's head nurse and Mette, discussing her nausea
- they went through all the medications--and selected THE one
- Mette talked about how tired she is of "hospital" food--and Dr. Rokkjær asked the nurse to find out (later) what she wanted, and get it for her--since, he said, she threw up sixty dollars worth of medication, no sense in not feeding her something that will stay down
- then they discussed the possibilities of foods that she might enjoy
- later the nurse came back and took Mette's "order" for the next couple of days
- so, she had three good meals Wednesday--she ordered pan fried fish fillet for dinner and then the lunch wagon came around and it had fried fish--so she had fish twice, and liked it both times
- the apparent progress continues: some friends came by that had not been around since last week and they were very happy to see her new (old-self) look
- well, I don't want to over do it: she still has a yellow tinge and is thinner and weaker than the "old Mette"--and of course, the laying around 23 hours a day is just not her stlye
- on the other hand, we were up and down the halls three times during the day
- and, she laid in bed and did physical therapy prescribed exercises, twice (maybe three times) during the day
- we are still hopeful that this week is leading up to her being sent home for Christmas
- but we are nowhere near sure that that will happen
- her legs have begun to retain water, and the doc on the floor last night is concerned that there may be a blood clot problem developing--and, he ordered an ultrasound of her limbs for Thursday
- and, most troubling (to me) is her elevated temperature--as far as I can tell the medical folks are "watching it" (and monitoring the blood test infection parameters) because it seems her body is taking care of the infection, so far
- so, outside of blood clot threat, infection in fact, continued periodic nausea, lingering back pain, debilitating fatigue and a definite yellow cast--well, besides all those things she is doing REAL good
- and, for now the informaion at "Contact Info" should be read if you intend to visit Mette in the hospital
Thursday, 21 December (Posted 0600 Friday)
Still staying with friends (Birgitte and Henrik) about 15 minutes from the hospital, on this the shortest day of the year..
- so, my pessimism yesterday was well founded
- on arrival this morning it was easy to see that the recent progress had halted, and reversed
- she is more yellow today than yesterday; her fever persists; she is VERY tired and weak
- the daily rounds (still held in Danish) were quite confusing to me, after the good doctor left I learned
- the fluid they saw in the liver on Monday, and wondered about (I didn't wonder because no one told me they saw it)--now they know what it was
- because all her infection parameters are WAY up today; and, because the fever persists they know the fluid observed was due to an abscess in the liver
- so, the plan is to go in (tomorrow) and install a temporary drain into the liver, precisely to the site of the abscess, so that it may drain (its easier on her body to just let it drain out than it is for her to "process" it out the normal way)
- the trouble is that she has had anti-coagulation medication long enough that now she can't have any holes poked in her liver for fear of an uncontrollable bleed
- so, they began medication (vitamin K via injection) to increase the speed at which the blood coagulates (the opposite of "thinning")
- a blood test will be given early in the morning to determine if the drain installation can go forward on Friday, or if it has to be moved back to Saturday
- if there is a chant, good thought or prayer left in your being--you might consider using it for Mette..this is a serious thing
- we have abandoned the idea of Mette going home on Sunday for Christmas
- in fact, the wonderful Priest Pia Sundbøll [eMail:vilbat@mail1.stofanet.dk] of Skt. Johannes Kirke (Saint John's Church) stopped by again this morning. We told her that we were making plans to attend the 1330 Christmas service to be held in the Hospital on Sunday
- Mette ate little for lunch, slept most of the afternoon and ate very little for dinner
- then she took a nap before bedtime
- we smiled, held hands and talked a little before I left--its hard for me to see her so weak
- if you plan a visit prior to Christmas read the information at "Contact Info" about visits
Friday, 22 December (Posted 0700 Saturday)
Still staying with friends (Birgitte and Henrik) about 15 minutes from the hospital
- yesterday was the shortest day of the year--today seemed a LOT longer
- it just never gets any easier to watch Mette get weaker, or yellower, or less lucid..
- thankfully they have the pain medication just right..or at least it seems so since she complains very little about pain
- and, despite all else she now has had no nausea (not even the feeling that she MIGHT be sick) since Monday night
- but, to the reason for the long day: the placement of the drain was to have occurred early this morning...the first blood test was drawn before 0700 this morning..
- I arrived a little before 0800--just in time to learn that the blood was still "too thin" (or does not coagulate fast enough)
- the procedure was rescheduled for mid-day, following another blood test around 1100
- that test results was back a little after 1200 and it was another disappointment--still too thin..
- she asked for lunch, it was served and then they decided to give her two units of fresh plasma (I assume it must contain the magic stuff to bring the blood chemistry into the range where an uncontrollable bleed a low probability)
- she had a good lunch and they had to wait for her stomach to clear before the ultrasound could begin
- at 1700 she had had most of the second unit of plasma and they wheeled her to the ultrasound studio
- the doctor searched for the abscess intently, for a long time--then he went to look at the pictures from last Monday
- and came back and searched a while longer--then went away again, and I followed..he pointed out what he was looking for, it was a area that showed as a black circle/sphere on Monday..
- but, back at Mette the ultrasound showed nothing like that--my heart was in my throat as he said (first in Danish to Mette and then in English to me) that he could NOT put a drain in to something that he couldn't find..
- he kept at it and finally found an area which, though not black, appeared round and in the right spot--he pointed it out to me and said he thought that air from the bileduct had infused into the area giving it an appearance almost the same as the surrounding tissue
- as a trial, about 10 minutes later (after some sterile preparations) he inserted a long quite slender needle into it, pulled out some reddish liquid, smelled it and said "Thats it."
- another three or four minutes and he had replaced the needle with a drain and she was done
- back in the room by 7:30 PM she was resting peacefully--her mom wanted to stay as long as she could, so I left (on telephone standby to be recalled if needed)
- its a little after six Saturday morning, as I type this--I'll be there by 0800, as promised
- we hope she improves some today
- your hopes are appreciated..
- do not plan a visit prior to Christmas--and, until she improves some she won't be taking calls either
Saturday, 23 December (Posted 2100)
I have a room at the patient hotel...but, the nurse said I can stay in Mette's room
- arrived at about eight this morning--she was asleep
- around 0900 she awoke and I asked her if she wanted tea, she answered yes--asked if she wanted protein drink, yes--asked if she wanted bread and cheese (typical Danish breakfast) she said yes (all replies were an almost inaudible whisper, or a nod)
- she took one bite of the bread and cheese, and only a few sips of tea and the protein drink
- she slept almost all of the day and has had little more--just sips of water and fruit juice
- a few close friends came by, but I'm not sure she knows it
- the doctor who made rounds at 1000 was asked: "Should I call her mom and tell her to come now." He answered no, she is stable and they hope she gets better
- and the doctor prescribed two units of blood, to help give her a little more strength to fight the infection
- about that infection: last night the doctor put a drain into the liver and pulled out some red looking foam--this morning, and all day, that drain has produced normal looking bile--in other words, all the bad stuff must have drained out--that is good news
- around noon Dr. Rokkjær came and spent almost an hour reviewing all the events of the last days and decided to reinitiate the blood thinning, because he said it is THE way to breakdown the blood clot in the portal vein (that is the thing that led to that portion of the liver dying, which subsequently became abscessed)
- its now 1821 and the first unit of blood just began going in
- and, I've just gone over the latest blood tests and amazingly enough they are better today than yesterday
- what I can't understand is why she is not better today than she was yesterday--something is going on here that (clearly) I don't understand--for, she is very very weak
- its time for me to finish this and post it from the room in the Patient Hotel, then I come back over to her room for the evening
- more tomorrow, good or bad
- do not plan a visit prior to Christmas--and, until she improves some she won't be taking calls either
Christmas Eve--Sunday, 24 December (Posted 2030)
UPDATED Christmas Day, 25 Dec (posted 1300 and 2130)
I'm staying the night in Mette's room, as is Mette's mom--you might say Mette has all the love, support and attention she needs (maybe too much, if that is possible)
- the bottom line on this Christmas Eve (given at the top, where it belongs) is that Mette is a LITTLE better today than she was yesterday
- spent last night here too--awoke several times during the night, usually to find Mette sleeping
- got up around 5:30--she slept most of the day..
- well, she had a busy day with five doctor (three different individuals) visits and a feeding tube insertion through her nostril
- that was done because they said it is now very important that she get the right nutrion and that her intestines continue working AND processing out the poisons which were produced by the abscess in the liver
- that abscess has drained now for about 48 hours and tube is now producing mostly bile, with a little "yuck"--which is a little of the abscess still coming out
- she is still getting antibiotics--sometime tomorrow, or the next day (depending on exactly which bacteria the culture produces), they will switch to an antibiotic exactly suited to kill off whatever remains of that infection
- one of the doctors today was an internist, who was called in after I suggested a consult with the best in the world for "new" and/or "good" ideas for Mette at this time--remember, her blood work results indicate that she should be looking and feeling better than she appears
- the internist made a thorough review of her records, and an examination--after which he concluded that she is receiving the optimum care for her condition except that she doesn't look/act as good as her bloodwork indicates she should
- that, though not certain, he believes may be because she is moving slowly into a "liver comma" and prescribed the standard treatment for that saying that it won't hurt her if he is wrong, and it will definitely help to get started on the treatment at a very early stage in its development
- again, on his day off (Sunday AND Christmas Eve) Dr. Rokkjær came to review his "pearl" (he called her that way back in July)--anyway, he said the food via the tube, "liver comma" treatment, "blood thinning", and antibiotics--along with the fact that the liver continues to perform its tasks (though at a reduced level) despite its condition--WELL, he said all of those things gives him hope that Mette can get better
- any, and all, medical folks out there reading this are welcome to review the blood test section and offer their own opinion via email--BUT, do it quickly please
- do not plan a visit prior to Christmas--and, until she improves some she won't be taking calls either
- Merry Christmas to all--and many many deeply felt thanks to all of you who are "pulling for" Mette right now--especially those wonderful folks working at Ward L3 at the Århus Kommunehospital--we love them all, they keep saying they are just doing their job--but, I believe they are doing much more, much much more
Noon Christmas Day, update:
- another fitful nights sleep
- but, she has been awake three or four times this morning and she is more aware of what is going on..and she answered a few question (do you want water?, for example) directly, without hesitation or confusion (as yesterday)..and she answered some by speaking in a soft voice that could be heard and understood (never happened yesterday), and once I asked if she wanted water and she answered "No. Ice."..
- the improvement is slight, but we are thankful for it..
- we await today's blood test to see how it is going there
- the internist came by and said with the improvement he sees they will continue treating the potential "liver comma" condition
- more later today
- a visit today would probably not be a good idea..she is seldom awake and needs rest
- but, Merry Christmas to all--we hope you all have a better day tomorrow, and we hope the same for ourselves
Late Christmas Day, update:
- I planned another update for two reasons. One was to include the latest blood test (very marginally better) and the other is because I expected (or deeply hoped for) more good news
- Mette remains almost the same--she is marginally better, staying awake a little longer and being more "here" when she is awake
- well...I forgot to say that this afternoon Mette woke up and suddenly said she wanted to sit up--I pulled the cord for the nurse to come help and explained to Mette (she does not usually remember facts from the last awakening) that she is not strong enough to sit up alone and that it will probably hurt when she tries--anyway two nurses came and Mette sat up with her legs over the side of the bed for about five minutes
- then, around 6:00 in the evening she did the same thing, but this time after sitting up for a couple of minutes she said she wanted to stand--and with help she did..for maybe a minute and a half or longer
- and, around 8:00 PM she woke up, had a couple chips of ice and said she wanted to sit up, again--while awake for the last couple of days I've used the opportunity to tell her that her blood work is a little better, the infection is better, etc--this time when I told her she said "You already told me that." I couldn't believe it and said that she got a hello from Frankie via eMail, and she said "You told me that too."
- my mom was a nurse, one thing I learned from her is to always assume the patient is listening to everything said, even when they are in the operating room, deeply sedated--anyway, about 7:30 tonight the movie "101 Dalmatians" came on--I saw it on the TV and said to her mom "That is 101 Dalmatians." then when Mette was awake I saw her look at the TV and I said "Its 101 Dalmatians" and she looked at me kinda irritated and said "And you told me THAT too."
- my point is, she is so very much more "here" than she has been since mid-day Thursday
- if you think I'm making too much of this, maybe I am--but the truth is that on Friday I didn't think she would be here today--I am easily pleased by any progress which rekindles my hope a little (and I am VERY cautious about becoming too optimistic--it hurts so much to expect progress and see another setback)
- Considering a visit or phone call to Mette? See the information about that on the Contact Info page.
Tuesday - Wednesday, 26 - 27 December 2000 (Posted 1530 Wednesday)
I'm staying the night in Mette's room, as is Mette's mom--but she is getting better and I don't think that is going to continue much longer
- she was awake several times last night--usually because abdominal pain woke her
- still "eating" via feeding tube, around the clock, and taking almost nothing else but ice or ice-water (which is okay, since the feeding tube is providing all she needs)
- she is better today--progress has been constant since it began, after hitting a low sometime Sunday (I guess--time runs together for me too)
- each time she awakes she is a little more aware..
- at noon the "old Mette" was back, she was instructing (nicely) the nurses on how to do this and that--at one point, after she had asked to be helped to sit up: with two nurses there to help I asked asked the nurses how I might assist in the sitting up operation by saying "What should I do?, to which Mette replied: "Be quite, and watch."
- she was like that most of the afternoon--well, she still sleeps almost all the time, but is awake a little more each couple of hours..and is more involved all the time
- Tuesday night-Wednesday morning was the same: awake about every two hours asking for a pain shot--being awake for 15 to 20 minutes and then fast asleep
- that was the pattern until when she awoke at 4:30 Wednesday morning, got her shot and then instead of going back asleep soundly, she drifted in and out of a not very deep sleep
- another requested pain shot at 7:00 this Wednesday and drifting between sleep and awake since--until posting of this..
- MAYBE more later Wednesday
- Considering a visit or phone call to Mette? See the information about that on the Contact Info page.
Thursday 28 December 2000 (Posted 1630)
I'm staying the night in Mette's room, as is Mette's mom--but she is getting better and I don't think that is going to continue much longer
- she was awake several times last night--usually because abdominal pain woke her--but not as often as the night before..and her request for pain killer didn't come as fast
- still "eating" via feeding tube, around the clock, and taking almost nothing else but ice or ice-water (which is okay, since the feeding tube is providing all she needs)
- she is better today--progress has been constant since it began, after hitting a low sometime Sunday
- she still sleeps almost all the time, but is awake a little more each time she awakes..and is more involved all the time
- today they increased the amount of pain reliever she gets via a patch on her skin..hoping she will need fewer injections
- and, tonight they will give a sleeping pill..hoping she can get a full night of real rest
- today the doctor said that the plan now is to, soon after the new year, to try to "break up" the clot in the portal vein and install a stent (tube) to keep that vein open
- Considering a visit or phone call to Mette? See the information about that on the Contact Info page.
Friday - Saturday, 29 - 30 December 2000 (Posted 1700 Saturday)
Considering a visit or phone call to Mette? See the information about that on the Contact Info page.
I'm staying the night in Mette's room. Mette's mom drove home Friday evening. She, Kaj and the dogs will celebrate the millennium change together--Kaj's house is the most distant from folks likely to shoot off tons of noisy fireworks--Molly and Susse are VERY frightened by the lights and sounds in the sky. Both will be treated to a little sedative in their New Year's Eve cocktail.
Friday:
- progress continues: pain diminishes, strength builds, color returns, etc
- still "eating" via feeding tube (through a nostril), around the clock, and taking almost nothing else but water, tea, soda, and etc (which is okay, since the feeding tube is providing all she needs)
- she has had a several bouts with nausea and vomiting since Tuesday--but, this does not mark a return to the pattern of before..this is directly related to the fluid delivered via the feeding tube..that tube actually goes through Mette's stomach and then around a corner and several inches down into the small intestines..that is done since it is known that the fluid will irritate the stomach..
- she still sleeps a lot, but is awake now for an hour or more at a time, several times a day (and night--which is one reason I'm here, to provide what aide, comfort, support and entertainment that I can
- again today they increased the amount of pain reliever she gets via a patch on her skin..(but, she still was awaken by pain and needed more supplemental injections than desired)
- they gave a sleeping pill at bed time Thursday evening..hoping she would get a full night of real rest--that didn't happen because the pain medication wasn't up to it. By Friday night the higher level of the patch administered reliever gave more restful sleep without a pill--but, she still awoke about every two hours or so
- I wasn't in the room during the doctor's rounds, but they were uneventful except that Doctor Rokkjær wanted the feeding tube inserted a little further into the small intestine to try to relieve the nausea problem
- that procedure was done while I was in Hosby preparing the homestead for the onslaught of New Year's Eve revelers (one of the few things that irritates me about Denmark is that everyone expects, and practically condones, the practice of midnight mischief on New Year's eve--mail boxes are often targeted by fireworks (I've seen the 45 dollar model blown off a concrete wall in two pieces), trash cans emptied, gates lifted off their hinge and deposited in a distant neighbors yard, etc.--most things are much more destructive and bothersome that the Halloween night "Trick or Treats" of my boyhood
- inserting or repositioning the feeding tube is not one of Mette's favorite pastimes, but she got through it--and then, not too long later she had the need to empty her irritated stomach and, guess what, out of her mouth popped a loop of the feeding tube--only thing to do was pull it taunt again (by pulling it out the nostril a bit) which meant it was no longer far enough into the small intestines
- so, we made a trip to that torture chamber around seven o'clock last evening--actually, most of her fear of that procedure is gone, and with it the discomfort level has subsided substantially
- while in Hosby I missed a visit by our favorite Priest, Pia Sundbøll [eMail:vilbat@mail1.stofanet.dk] of Skt. Johannes Kirke (Saint John's Church)--I'm really sorry I missed her, she has become a very important part of our support network
Saturday
- progress continued through the time of the posting this update--and we see no reason why it shouldn't continue
- Friday night's sleep was restful, though it came again in two to three hour stretches
- breakfast consisted of a few sips of tea and the constant drip via the feeding tube
- she had her hair washed (while laying in bed), and smiled the entire time
- she drank most of a glass of "protein drink" just because she enjoyed the taste (still getting all the nutrition she needs via a tube--did I mention that that is NOT because she can't eat, but because it is a special mix that, when combined with intravenous glucose, forces the intestines and liver to perform as desired)
- she had a few visitors and enjoyed each
- a wonderful attitude and bright smile dominated the room all day..
- I guard against becoming overly optimistic, or expecting too much too soon--it is emotionally safer (for me at least) to be pleasantly surprised than brutally disappointed
- we have been here six weeks, last Thursday--if there is one thing that is abundantly clear it is that conditions can turn very bad, very quickly
- so, don't stop sending the positive energy, good thoughts, best wishes, etc this way--and thanks to all of you who have helped that way, for so long..
Sunday - 31 December 2000 (Posted 1700)
Happy Birthday to Janelta (my sister in Arkansas) and Nils Jørgen Hiden (our dentist and friend in Aarup)
Considering a visit or phone call to Mette? See the information about that on the Contact Info page.
I'm staying the night in Mette's room. Molly is with Inger and Kaj--Kaj's house is the most distant from folks likely to shoot off tons of noisy fireworks--Molly and Sussi (Inger's little dog) are VERY frightened by the lights and sounds in the sky. Both will be treated to a little sedative in their New Year's Eve cocktail.
- progress continues--still slow, but much appreciated and very evident: pain diminishes, strength builds, color returns, etc
- still "eating" via feeding tube (through a nostril), around the clock; today the doctor said she should increase the amount of fluids she takes by mouth and should begin to take soups and soft foods again
- she has had no nausea for several days
- she still sleeps a lot, but yesterday she was awake continiuously from about five in the afternoon until after 11 at night
- the patch pain reliever is catching more and more of the pain--for example, she had a sleeping pill and pain shot around 11 last night and didn't awaken (for another shot) until 5:30--the longest stretch of continuous sleep she has had in over a week
- when visiting hours rolled around and we had a wonderful afternoon with Nils Jørgen, Hanna and Nora Hiden (that's right, its his birthday and they drove over from Fyn (two hours each way) just to spend a few minutes with Mette--we have learned a lot from the experiences of the last year, one is that friends are precious
- tonight we will celebrate the coming of the new year from the hospital room--and be thankful that we can
- we will look out the window near midnight and expect a splendid fireworks display
- the biggest problem today was in the early afternoon when a rather long crying spell interrupted an otherwise good day--Why was she crying? because she is now impatient and READY to get out of here. I hope that feeling passes soon, because there is no doubt in my mind that we are going to be here a while longer
- so, don't stop sending the positive energy, good thoughts, best wishes, etc this way--and thanks to all of you who have helped that way, for so long..
We hope that 2001 is the best year ever for all our friends--furthermore, we hope that it is just the first in a long string of better and better years..
[Mette's story, from the beginning to 4 July 2000]
[Mette's story, 5 July to 8 October 2000]
[Mette's story from 1 January 2001]
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