Tuesday, 5pm

Hi all readers,
Not sure I'd menioned that on Saturday Anne had a low grade fever for awhile.  It went away with some Tylenol.

On Sunday she had a good quiet day, sleeping alot, and she walked one lap around the 400 foot block, late afternoon, without stopping.  I don't remember much else happening on Sunday, maybe it will come to me as I write.

On Monday another low grade fever was detected and it got the doctors attention.  Around 7pm we learned that Dr. Ebrahim had ordered a chest xray, and blood work. 

Anne also learned that there is concern for 2 blood clots.  One is near the pelvic area, and the other in the chest.  It seems that these are expected, maybe routine whenever someone spends alot of time in the hospital and it not up and around much.  These are treated with blood thinners, but doctors do not spend alot of time tracking or studying them to see if they are dissolving.  It's seems like they are common, treated casually.  They can be dangerous though if they make it to the lungs, especially if they are large.  Remember David Bloom from NBC news.  Anyway, Anne is being treated for these. 

Last night Anne and I enjoyed hamburgers from Room Service.  Anne ordered us each one, with cheese, and loaded with all the condiments you can imagine.  I cut Anne's burger in half and I got upset when she went for the second half.  She was enjoying it so much I was certain she'd soon be in severe pain, calling for meds, and that I'd be here late all worried about her.  Well, the burgers were fantastic, and big, she was still raving about it today, and, she never became sick after eating the whole thing.  I'd have bet money otherwise.

At around 8pm we headed down to have the chest xray done.  I stayed with her because I don't like her having to go down to the basement alone where the xray dept is.  It's kinda the older part of the hospital.  They kind of drop you in a parking area to wait, then they call your number and you go in, then they park you again until the transport person comes to take you back to your room.  Anyway, it went quickly.  We were back in the room by 9pm.  Our concern was that the xray might reveal something serious causing the low grade temps, such as pneumonia or something like that.

Today we learned the good news that there is no pneumonia to be found.  A urine test did conclude that Anne has another UTI.  Perhaps caused by the catheter being used for so many days?  Anyway, all good news.  The UTI can easily be treated. 

Blood tests results from last nights draw were not available today.  So, we hope those tests do not show any other infections beyond the UTI.  Dr. E. warned that the pic line is a possibility, and so are the 2 small incisions from the stent procedure.  We hope for all good news coming out of the blood work.

Today Anne ordered a chicken sandwich for lunch, which looked as good as the burgers did last night.  She loaded it with condiments and enjoyed again, and without sickness afterwards.  I am amazed or should I say I give up trying to figure out this girl.   

She took 3 walks around the 400 foot block today.  Everyone is happy about how she's doing. 

Today Dr. E. called the fever and UTI minor setbacks.  He seems in no hurry to send Anne home.  He has reduced her Lasix dose to one pill daily, down from 2.  She has lost 47 pounds of fluid weight and he said he'd like to see her loose 10 more.

Our prayers are being answered. 

Sorry I left you hanging yesterday.  It was a long day with activities will into the evening keeping us busy.  And thanks for returning today to keep up with Anne's progress.      

No Visitors Sunday Please

Hi Friends,
Anne has had a good weekend.  Her catheter was removed yesterday, and after 2 tries she remembered how to pee at the toilet.  Now she's running back and forth to the bathroom frequently as the body fluid continues to vacate her body.  Anne has lost around 43 of the 54 extra pounds so far, and she's getting around much better.  There was one pound gained yesterday, and 6.8 lbs lost today.  She is now only 11 lbs over her original weight dating back to  November.

The on-call doctor today, Dr. Hedlund (the one who kindly admitted us to Gibson on Christmas eve based on our phone call) recommended strictly rest for Anne today, Sunday.  Same as what Dr. Ebrahim recommended on Friday for Anne for this weekend.

Yesterday Anne got up and walked around the block here, around the Gibson Pavillion block that is, it's about 400 feet.  She continues to have some pain after eating, and after excercise, but it seems manageable using pain meds she has available to her.

There has been concern at times for an occasional low BP.

Anne would like to thank all of you for your cards and expressions of love and concern.  You're prayers help so much, just knowing you are there.

If Anne can continue to get stronger, and to loose the excess water weight, then she may come home before long.  We'll have to see.  She is having some really good times now, looking good and feeling alert, that mixed with many periods of belly pain, much to be expected.

We hope you are all having a good weekend, enjoying the bright sun and warm temps. 

Feeling and doing better, Fri, 3:44pm

Anne has done very well since surviving yesterdays 'stent event'.  It was certainly draining (no pun intended).

There's a noticable difference in how she feels.  Alot of it could be relief, as she was definately 'freaking out' in the morning as she waited for the procedure to begin.  She was told she'd be 2nd of the day, happening in late morning.  It ended up starting at 2pm and ending at 5pm, so it was a long and tedious wait.  She's more 'herself' ever since sitting up last night once the sedation started to wear off.

Today Dr. Ebrahim told us he was pleased with the reports he'd gotten back from Interventional Radiology.  He said they radiologist was challenged, but he emphasized how well the job was done, just as good as it could have. 

For this weekend he's prescribing nothing but rest and relaxation for Anne. He's now changed her diuretic med from IV Lasix to pill form. 

Sounds kinda boring, but for me it doesn't matter.  It doesn't take much to entertain me while I'm here.  I'm fascinated just watching the urine drip into the catheter bag, as long as she's smiling, and she is smiling more and more. 

I told Dr. Ebrahim how I was just amazed how on Wednesday he had called for the CT Scan and uncovered the problem with the IVC vein, and on Thursday the problem was successfully repaired and fluid was running from Anne's body.  Some of the things they do here just blow my mind. 

I'm so happy for Anne that she has that procedure behind her.  We were given all the necessary information ahead of time as far as what needed to be done, and what to expect, and in a very relaxed fashion.  With that we  were given a chance to ask all of our questions, but Anne was groggy tired and was never really sure what it was all about.   It was all very frightening to me too, just to think that Anne was facing yet another procedure. 

Dr. Ebrahim had said to us yesterday morning that the stent would be our 'last option' in terms of helping Anne offload the excessive body fluid that was keeping her down.  He didn't know of anything further that could be done.  Thinking about that, that was a very scary thing to hear.  Anne said to me this morning that if the procedure had failed, that her entire thought process would have shifted to things like palliative care and hospice.  Can you imagine what she went thru yesterday?  She was so courageous.  

This morning when I got in she was relaxing in the recliner.  She had a heat pad on her right front shoulder where the upper incision happened yesterday.  There was some pain there.  She had already had breakfast.  Then she asked for help with a shower, then she combed her hair out.  She ordered and ate lunch, and now she's resting in bed.  It's around 4pm. 

There shouldn't be too much news to blog about over this weekend.  All in all we're just relieved, happy, and pleased to think that Anne will be mobilizing soon, wanting to walk about and get stronger. 

We again thank you all for your continued support, prayers and good wishes.  Thank you for being there.  Know that Anne is feeling better, and relieved, not ready to give up.

Stent procedure a success, Thursday 7pm

Hi all friends and readers,
Today was a long, tumultuous, stressful day.  Important decisions were made by Anne, and this afternoon she went thru yet another procedure.  She came thru it as you'd expect, like a trooper, with flying colors.  

Anne was finally taken for the procedure at 2:00pm.  She was taken to the procedure room down in interventional radiology. She came out of it around 5pm.  At the moment, 7:15pm, she's still very drowsy.  The procedure of installing 2 stents near the liver and heart, to create a channel for the Inferior Vena Cava was a success.

She's just now taking her first drink of the day, first water, then she asked for her mango-pineapple smoothy which was on standby in the freezer.  We're just listening to some TV and waiting to see if she becomes interested in the turkey dinner that's been delivered for her.  The pumpkin pie looks good, and she has a serving of humus too.

The doctors had said they would go in thru the groin to install the stent, but they went in from a spot near the clavicle as well, and they installed not one but 2 stents.  The doctor came to see us after he was done and reported that it came out just as good as it possibly could have.  He was pleased.  He said on entry, they discovered that the IVC was completely ecluded (sp?), or closed.  Now it is freed up and fully operational. 

Since Anne has been back in the room here we've been pretty amazed in watching the generous flow of urine thru the catheter.  The IV lasix will not be given tonight.  I'm sure Dr. Ebrahim is hoping that maybe Anne's body will be able to process and expell the fluid on it's own.  In terms of the bodily fluid problem, the future is bright.

Yesterday as Anne pondered the stent procedure she was saying 'why not'.  Today, this morning fairly early, the doctors showed up to talk with and console Anne, and to get her decision.  She was much more unsure and anxious about it today than yesterday.  I can't blame her.  She was especially brave to make the 'go' decision, and I'm very proud of her considering what she's gone thru today. 

She asked for pain meds around 7:15pm, saying the pain was not the usual belly pain, rather that it felt as though it was a different pain from the procedure.  The nurse brought her some Dilloted and she is comfortable with that now.

It's time for me to shove off for the night.  I'm grateful for all of your prayers and concerns.

Weds, 7pm, CT scan results

I arrived early today, early enough to be here with Anne when Dr. Ebrahim came.  Laurie was here too.

Anne said she had a good night sleeping, and she was continuing to have a good morning.  Very sociable and alert. 

Dr. Ebrahim came with the news from the CT Scan.  He told us Anne's cancer spots, one on her liver, and one near her windpipe, were maybe twice as big as they were last October when they were discovered.

He told us what else he learned from the CT scan.  He understood why the diuretics were no longer as effective at removing the fluid to the extent that he had hoped.  He said the tumor in the liver is putting pressure on the IVC (inferior vena cava).  That is the largest vein we have which brings fluids to the heart from the lower half of our body.  With that pressure, the fluid cannot get to the heart, therefore cannot get to the kidneys, therefore cannot leave the body.

He talked about the possibility of having a stent placed in there to open the channel.  If it can be done, Anne could get down to her normal weight before she goes home.  She would also be more comfortable, and more mobile on her feet once home.  He was going to have a talk with the people here that do this, in interventional radiology.  He would study the CT Scan with them and ask for their opinion on the possible benefits, risks, etc..

Later, Dr. Chris Anderson, an interventional radiologist, came here to visit us and he spent time talking about the stent procedure.  He was very informative and helpful, and he answered all of our questions.  It is a non-invasive procedure, where they go in from the groin.  They can do a pre- exam and go in and look into the area before actually doing the procedure.  They can make a fairly good determination of their chances for success.  He says they do these every day, and as outpatient procedures.  There is very little of a recovery time involved.  All of this is going to be up to Anne and how she feels about having another procedure.  She has had a very good last 36 hours.  We'll see.

He did state that the recurring esophageal cancer is pretty agressive, and it will grow without treatment, and possibly cause other problems along the way.  At this point we don't know whether Anne will opt for any further cancer treatment.  I'm thinking not, but she never ceases to amaze you know.  So, the cancer could grow and over come the stent in the future.  No one knows.

Anne and I will sleep on it, pray about it, and make a decision tomorrow when Dr. Ebrahim comes back to see us.  It's alot for her to think about.  I have spent time explaining all of this to her when she has been alert.  We agree that we should sleep on it and pray. 

This could be done tomorrow if Anne opts for it.  After that a few more days of fluid removal with diuretics, and then she'd come home as long as any extensive Physical Therapy are not needed.  Anne would only go to one place for PT, and that would be the Brighton Campus of MMC.  That's where she went after her brain surgery, and more recently where she went to volunteer with Dixie, her therapy dog, on Friday mornings during the summer.  They know and love here there.

Please pray with us tonight.  Pray that we are guided to make the right decision, and do the right thing for Anne.

Tuesday, 7pm

What do ya know, a down and up day. 

When I got in, early today, Anne was miserable after being treated for constipation the last half of the night, including a suppository, very painful according to Anne, which she said brought her to tears.  That battle lasted well into this morning before it ended, and it included another painful suppository.

I missed Dr. Ebrahim on his rounds to Anne's room before 9, but then I was able to make eye contact with him in the hallway and he said, "I'll come see ya."  So, I sat tight till he came by.  I hadn't seen him since around last Thursday, so he knew I'd wanted to see him, and Anne told him I was trying to get in early for that reason.

He came back around 10:30.  He stated that Anne would be here for at least another week because of the fluid weight.  I've been keeping a chart of Anne's weight loss and we looked at that, and it showed she hadn't lost any weight for the past 2 days.  He knew that, and he stated that since Anne, and her kidneys, are tolerating the Lasix just fine, that he planned to increase the dose starting tonight.

Not only that, but since it's been a while since Anne's last CatScan, he ordered one for this morning, and Anne completed that between 11 and noon.  Before that she had to drink a quart of 'red stuff' in prep for the CT scan.  That was WORK to get that down.  She had a bunch of pain so that when the ride came for the CT Scan they put in for a 15 minute delay.  With all of that, it was a lousy morning, and she went down stairs not feeling very well for the scan.  Afterwards she asked for pain meds, and they came thru with IV Dilotted.  She had a good nap after that, and I ran to do a couple errands. 

I brought in a basic bare bones (2 inch thick) sandwich from Full Belly Deli and we shared that for lunch.  Yum.  She didn't even come close to eating half.  Moderation is the key.  Lean cold corned beef on marble rye with yellow mustard.    She tolerated it nicely. 

This afternoon she came to life and had a great afternoon.  She walked some, even out of the room.  We took several wheel chair rides which involves a small amount of getting up and about.  She had a good time seeing everyone around the hallways again. 

Then she had a good PT session even tho she didn't want to.  Corina did a good 'sell job' on her.  Good thing.  Gotta move. 

It's after 7pm now and Anne's still comfortable, watching TV and dozing after having some of tonights special, roast pork loin, gravy, mashed and green peas.  I was afraid she was going to really enjoy it (if you know what I mean), but she ate in moderation and it paid off.  No belly pain tonight, knock on wood. ! ! !

It's wonderful that she's suddenly wanting to move out of the bed and recliner more and more, to get up and move.  The narcotics coupled with a lack of movment is a recipe for disaster in terms of constipation issues.  She knows that.  She seems to just be feeling better today, and stronger too.  A pleasant surprise after a very tough morning.

I've gotta tell you, we both know we're going to learn something from the CT Scan, and it's worrysome.  Please pray for good news coming from that test tomorrow.  Last time a shadow was seen, last Fall, and we all know what that meant.  So keep Anne in your prayers.  Thank you everybody.     

The Long Weekend, 7pm Monday

Hi all friends and readers,

At the moment Anne is relaxed and watching afternoon TV.  She had a few lousy days this weekend, Fri, Sat, Sun, just not feeling well.  Not hardly any smiles at all.  It was a very long weekend and I noticed that I didn't update the blog all during that time.  Sorry for that, but well, there wasn't much good to say. 


Dr. Duggan was on call here this weekend, and when they couldn't help Anne get rid of the nausea on Saturday he introduced a new drug, at least new for Anne, Decadron (dexamethasone). I'm wondering if this had anything to do with the lousy weekend?  Just making a note of it here.
Anne continued to lose fluid weight, almost every day, to the tune of 27 pounds total so far.  There was a day she lost nothing, and another day she gained a pound.  Last Tuesday we determined that she'd been carrying 54 pounds of fluid weight.  With that, I guess she is halfway home. 


The IV lasix is still being used, and actually is being increased this evening.  It is given morning and night.  The nurse was wrong last Friday when she said she thought they'd change back over to Lasix pills and be sending Anne home in the next couple days.  Anne says that Dr. Ebrahim said today that she could be here another 10 days.  I hope to catch the Dr. visit tomorrow, but it's tough to be here daily, well into the evenings with Anne, and then get in here early enough to catch the Dr. when he's in here early.  Besides, there's no schedule, so I need to be lucky too.  We never know when the Dr. might pop in.

Anne went thru a sad period this morning, what with all the belly pain and nausea she experienced all weekend long.  It got to her and she became pretty discouraged.  She was having some tough thoughts and I was so glad it came out while I was here with her.  We cried.  She's pretty tired of all the drugs and care needed, and when the belly pain sticks around too long well she gets worried and scared. 

This afternoon though, when she became eligible for 2 more oxycodone pain pills around 2pm, her smile came back, her eyes opened wide again, and her face relaxed.  I hadn't seen that relaxed look since last week.  It was a relief.  So we hopped into the wheelchair for the second time since yesterday, and we took a spin around the place.  She saw tons of people around the hallway who she was glad to see, and she socialized as we walked.  So many people have such nice things to say about Anne, they just love her around here.  They are like me in that when Anne is down, they are down, and when Anne is up, they are up.  There's alot of love between Anne and her caregivers.

I'm asking you all to pray for Anne's well being, that she has more good times than bad going forward, that she makes good choices at meal time and can tolerate those meals, and that we can find the perfect mix of meds to make Anne as comfortable, alert, and pain free as we can, more often than not.

Weds_Thurs

Sorry friends, I guess I dogged the blog yesterday and left you hangin.  That's because not much happened on Wednesday, EXCEPT WE LEARNED THAT OVERNIGHT TUESDAY 8 POUNDS OF FLUID HAD BEEN REMOVED FROM ANNE'S  BODY.  That's more than 3 litres!!  There are 2.2 pounds of water per litre.

As soon as the IV Lasix was administered the fluid began running thru the tube and into the bag.  It works that way for about 6 hours following the injection.  Then it slows down.

Last night it happened again, alot of fluid was removed.  Anne is doing well with it.  She's eating and she's more alert. 

Anne had a great morning today, Thursday, then she ate about 1/2 of her chefs salad, and she had belly pain.  She did not ask for pain meds, rather she gutted it out, fell asleep, and now she's watching TV.  She's not interested in getting up right now.

Before the pain came,she turned to me and said, "I need to walk".  I was pretty psyched, but she hasn't walked just yet.  Now that she's awake maybe the urge will come back.  I get her up and around as much as she will allow.  I know she's encouraged today.  The PT person who came before lunch did a good job, moving Anne around the room etc, and she was  motivating to Anne.

Dr. Ebrahim came in at 2pm and said he was pleased with Anne's blood counts, that the protein in her blood is better and better.  That's important because, with that, the body is able to pull the fluid from the tissues to the veins, then the kidneys can move the fluid out from there, especially with  help from the Lasix.  He want's to continue this regiment, or some form of this regiment (maybe he'll switch back over to Lasix pills now that the blood protein count is up?) thru this weekend.  He was not alarmed with getting 3 litres at a whack the first 2 nights using the injectible Lasix.  The nurse thinks they'll inject the Lasix one more time, tonight, then move to the pills for the weekend. 

I don't see where Anne is being adversely affected by this big loss of fluid so far.  She seems better and better with it.  She had a good overnight last night and a great morning today.  I haven't seen her better for some time.

We had company yesterday afternoon, 2 close friends, and I won't name names, but I do want to appologize because Anne and I were not very sociable while you were here.  I keep saying this, but Anne is 'in slowslow motion', and I was just plain tired (maybe relaxing) when you were here.  It was good to see you tho, and Anne was happy to see you too, so please forgive us if we weren't very lively. 

Tomorrow will be made interesting where we'll be getting some snow between midnight and noontime.  It's sounding like a nice blanket will cover the ground between those hours, and then the sun is due to shine.  Gotta love those warm sunny days following a snowfall, with the accompanying bright blue winter sky, then listening to those clean drops of water spattering down from the trees in the sunlight.

Move day, full day Tuesday

Hi friends and family,

What a day we've had, full of activities.

Starting last night at 5pm we got word that MMC would be ready for Anne at 10:30am. 

I arrived at Springbrook at 9:30am to get Anne ready, then like clockwork, at 10am today the ambulance vehicle pulled into Springbrook and Anne was taken from there to Room 575 in Gibson Pavillion at Maine Medical.

Anne was having a nice morning before leaving Springbrook, doing well, but tired.  I asked if she was keyed up about moving back to Maine Med and she said 'yes'.   She said she hadn't slept very well overnight.

It is making such a difference to be here.  It's brighter, cleaner, there are professional nurses everywhere.  Anne is pretty psyched to be here.  The transition here was good, at least until they tried to install Anne's IV.  It took 4 tries.  Perhaps her veins are worn.

Dr. Ebrahim came in around 3ish.  He had waited for blood testing results to come back.  He was totally encouraged about Annes blood testing results this afternoon.  He said the blood protein numbers were much better than he expected, which was encouraging as an indication of her liver function. He said lots of her numbers looked good.  What a relief to see him.

He wants to remove at least one litre, or 2 pounds of fluids from Anne's body every day.  He may stop when 20 odd pounds are reached.  It will be done methodically.

Shortly after getting here and settled I had asked the nurse to replace the catheter that Anne came here with from the other place.  I was never happy with how it was working, we had asked to have it checked several times last week, and it seemed every night that Anne would call for the nurse to tell her that she had an urge to pee.  That didn't make any sense. Anyway, the catheter has been replaced with a shiny new one. 

Dr. E. has ordered lasix via the IV.  And another diuretic drug he called Bumex.  I haven't looked up the official spelling.  Our nurse also said they're going to use a diuretic called Spironolacton.  Maybe that is the Bumex.  Everything has 2 names ya know.  None of the Ethacrynic Acid will be used anymore.  I was told the IV lasix is way more effective than the pill form.

I can't tell you how pleased I am, and emotional too.  The fluid is flying thru this catheter into the bag.  I can litterally see the fluid rising in the tube.   The bag was emptied once already, only 1 1/2 hours after it was set up.  It holds 2500 ml, and it was almost half full, filled up to the 1000 level.  For the past week we've been waiting for something like this to take place, but it never did at Springbrook.  We don't know if it's the catheter, IV lasix, or a combination, but we're so relieved about what is going on here.

Today it was good to have some of Anne's friends and co-workers from Town Hall come in to visit her.  I actually asked them to come in and they couldn't wait.  Anne was glad to see them.

Dr. E. had ordered a Picc Line for Anne this afternoon.  That was after the IV had been installed, oh well.  The Picc line is like a central line, a fixed IV near her bicept that is sort of like a medi-port in that it can be used to administer meds, blood can be drawn from it, and it can be used for up to a year according to the tech who installed it.  They did it with ultrasound machine (?) and it took about 45 minutes to complete.  It is working like a charm, so the IV that was so troublesome to install has been removed. 

Laurie has been spending tons of time with Meme this past week, and we're so grateful for the help she's been.  She is so nurturing and loving.  It's been great.

Dana and Laurie have teamed up to take care of our pets Dixie and Beasley every day since end of November, and I am so grateful for that.  I don't know what we'd have done without that help.  I don't have to worry about it, and the pets are very important to Anne and me.  What a relief.

Tonight Anne ate her supper of haddock, mashed, green beans, and a tossed salad with ranch.  I think she enjoyed her dinner a little too much, and now she's complaining about belly pain.  It's getting worse by the minute.  She must've had that 'one or two bytes too many'.  Poor kid.

Another thing about today, the Dr. didn't order her the the oxycodone.  Anne's been living on it for months.  But, this afternoon when Anne had pain they offerred Tylenol 650, and, low and behold, it did the trick.  I like the thinking.  The fewer narotics the better.  We'll see.

It's 8:20pm now and I'm ready to head home on this icy night.  It'll take me a while to get there this day.  I'm so much more comfortable leaving Anne for the night than I was last week.  I hope she'll have an ok night, but right now she's fighting thru alot of belly pain.  As soon as it starts to calm down I'll say goodnight.

Monday, we have a plan

This morning I had a need to get in touch with Anne's Oncologist.  He has always pulled things together for us, and I felt like we had become estranged since we came here to the Springbrook Rehab and Nursing facility last Saturday.  I got a hold of Dr. Ebrahim's nurse this morning as soon as MCCM opened, and low and behold Dr. Ebrahim called me and Anne back at noon.  He hadn't had an update on Anne since last Saturday, so he asked me for the low down.  He wants to get involved and help us out.  He has a plan.

I told him that here at Springbrook we haven't made any progress in terms of reducing the fluid that has collected in Anne's body.  They have done all they can and Anne hasn't shed one pound of fluid all week 

In terms of PT, Anne has been here for 9 days and has shown only minimal improvement physically.  She can stand now without getting dizzy.  She stood for up to 10 minutes last night as the nurses fiddled with the catheter.  During the day she was up from her recliner several times, and she moved around between the bed, recliner, and comode with a walker, but no big strides.

For these reasons, I was eager to 'go for help' and make something happen today, actually, you might even call it my first 'panic attack'.

Dr. Ebrahim agreed that we've reached the law of diminishing returns here, and he's arranging for Anne to return to Maine Medical Center, probably tomorrow, for some aggressive diuresis.  It involves using drugs to pull the fluid from her body, and some serious and close monitoring, more timely blood testing than can be done here at Springbrook.  Anne is on board and OK with this plan. 

We hope and pray that this effort to mobilize the fluid will produce results.  It's important for Anne's well being because some of her blood counts are low now.  I pray this will help Anne feel better.

Anne wants to be at home as soon as she can, she is interested in the Paliative Care concept of being pain free, and as you know in her heart of hearts she would like to be on her feet. 

    

Plan for Sat

Hi Friends,

Today I'm going to take Dixie in to see Anne. 

Aside from that I have placed a call into the Maine Center For Cancer Medicine so that I can explain the situation to the Oncologists as soon as they return my call.

I need to focus on how to make Anne comfortable, and to discuss her wishes with her going forward.  Anne has worked as a hospice volunteer, and she's aware of facilities and options available to her.  We will be having this discussion today, with that and in consideration of what medical professionals say, we'll be making decisions on how to proceed.

Rest asssured that Anne is loved and in good hands, and she will actively participate in the plans for how we move ahead.  She told me she does not want pain, and she wants to 'die well'.  These are my goals now. 

I know that her family wants to be there for her, and at the right time, and I do my best to keep you informed.  In my minds eye, we will decide on a wonderful place where she'll feel like she is living out her life as she dies, rather than fight for the rest of her time.  It would be a place with first rate nursing, where Anne will have a clear mind, be communicative, and where family and friends can visit and share time with her in.

I'm not giving up positive thinking.  No one knows how long Anne will carry on.  At this point just trying to take care of Anne, to be with her, surround her with love and care, find the right mix of medicines, and make her comfortable in any way possible for as long as she lives.

Friday Evening News

First part of today was good for Anne.  Her head is back and alert, her eyes clear, her sense of humor is returned, and she is up and around just a little bit more.  She rode a recumbant bike today in the gym at Springbrook, and the PT said she's doing so much better.  She still needs help to get up out of her seat, and she cannot freely walk.  

Anne's been eating better for the past 2 days too.  She hadn't asked for any pain meds since we got her off the oxycotton, that's until tonight after supper.  I'm certain she had one or two too many bites of the chicken lo mein served for supper.  At least she had the appetite, and she enjoyed it.

I'm very sad though to let you know that we got some bad news from Dr. Steinbrecher tonight around 5pm.  Right now, when we're thinking Anne is on the mend, she was weighed and then we learned she's only lost one pound of the body fluid all this week while taking the dieuretics.  They're not doing the trick, and her body cannot seem to shed the fluid, or should I say move it to where it needs to be, in her vascular system. 

Her legs and feet are looking better and better, but all of the fluid we've been telling you about is still with her, problem being a lot of that is now in her mid section, near her abdomen and other organs.

With that, the Doctor said her liver is not able to make protien that her blood needs.  She said her organs are struggling with the fluid surrounding them.  She reiterated, it's a very serious situation.

The Doctor said that the cancer is complicating matters.  She warned that when esophageal cancer returns, that it's dangerous. 

She also said with this fluid around her abdomen (Anne's tummy is very tender) there is always an increased risk of infection.  Also that the fluid could affect her lungs.

All this news threw us for a loop, and we were somewhat shocked for a time.   I asked Anne if she feels the cancer, and she responded, "I feel the pain."  This girl has been thru hell and back the past 2 years, and is in the fight of her life right now, however she still has never complained and she is somewhat at peace with it all.

The plan is to enhance the dieuretics over this weekend with the additional one that was being used at Maine Med 2 weeks ago.  They'll start the new one in the morning (it's a once a day med), and set up a catheter to make it easier on Anne to pee.  We hope and pray that her body responds so it can shed fluid this weekend.  The Doctor will be back on Monday and we'll see where we are.  We pray that her liver will then recover and be able to create the protein that her blood needs.

Thank you for your prayers everybody.

Thursday, 4pm

It's a new day, and a wintery one, finally some snow around here.  I could hardly keep our 4 wheel drive plow truck on the road on the way into here at 10:00am.  Roads were snow covered, unplowed everywhere.  I don't look forward to shovelling out Dixie's kennel if it starts to rain before I get home.  This morning the snow was perfect, dry, sugar like, and easy to move.   There was about 4 inches then, but I think at least 4 more have fallen since I left home.

Yesterday I was able to pick up some protein samples at a place named Portland Nutrition.  The dietician referred me there, said they give samples, and stated that Anne would benefit from it in her bodies effort to get the fluid off.  I've been mixing some the past 2 days into Anne's Mango Pineapple Smoothy which I bring in with me.  She looks forward to that smoothy and she likes the mix.  It's a vanilla flavor.  I have a bunch to try, a couple chocolate, and a couple strawberry.

I may 'sugar coat' things sometimes as far as Anne's condition, but that's because I'm so hoping she is doing better and will turn the corner any day.  Today I believe she has been more communicative with the pain meds having been changed back to 'PRN' (patient request needed?).

She is still very tired and sleeping alot, but when folks have woken her today for whatever reason she is clearer and more responsive.  Her sense of humor has returned too.  She hasn't had any pain med today, none.  She has taken scheduled nausea meds.  Would be good if we can work to reduce those over the next several days.

I arranged for a nausea med (zofran) injection at 5pm daily which is timed that way to help her tolerate her dinner, which comes around 5:45.  Nurse Celine at MMC started that and it worked good for Anne.  She isn't eating very much of her meals but she has an awful small stomach anymore.  She hasnt' eaten much for almost 2 years now.   

Today she had 2 episodes where she told the CNA that she had belly pain.  I stepped in each time and asked that Anne be moved to the comode beforde pain meds are given, to see if she'd get relief from 'going'.  Each time she had a bowell movement and peed, and she was fine when she was cleaned up and moved back to her recliner.  No pain meds last night, and now none today!!!

I've asked that she be weighed each day while on her feet (not the seat scale, it has a bad rep).  I asked that they post the information where I can check it daily.  I want to track her fluid loss by doing so.  When she got here she had 38 pounds of fluid to shed.  Not sure how else it can be tracked.  Her legs are still puffy, but thru my rose colored glasses I think I'm seeing improvement.  I asked Anne today if her legs were feeling any better and she said 'yes'.  There's still a way to go, but we are exercising patience.  Tomorrow we see the doctor, and we'll talk all about this.

Anne took OT and PT exercise today as she sat.  She also got moved several times to the comode, which is hard work for her at this stage.  I actually asked that the CNA's ask Anne every two hours if they can help to move her to the comode on schedule.  I ask because she's using the dieuretics, and having to pee alot.  Also, I believe every opportunity to move her body is a good thing.  The Nurse Manager said they would do this, but not when she's fast asleep in the middle of the night.  After she gets up and down, I noticed today that she is able to scooch back into her chair a few times on her own, easier than before.

Ray, the OT, feels that Anne can go to the gym tomorrow and use the recumbant bike.  I'm thnking it's a long shot.  I don't know how she'd get on there, but if she can, and she pedals that bike, it'll seem wonderful and I know she'd be proud.

Right now she's sleeping soundly, but she has had alot of activity today, so it's all good.

I've requested that when they put the pillows behind her back in the recliner that they put them the wide way across her back instead of up and down direction.  When they've been up and down Anne has had to scratch her back on both sides like crazy when she gets up.

Anne's seems aggrevated with me today because I bug her about drinking water, and I've brought some protein bars which she hasn 't been interested in yet.   They replace meals she doesn't care for.  We used them on the road trip last year and she does like them.  She's tired of hearing about these thins from me now, so I'll back off for awhile as long as she's drinking some sort of fluid.

I'm encouraged that she's been more comfortable and communicative this day.  

       

Weds, 5pm

Not alot of progress this afternoon.  As far at this morning, those that worked with Anne said she did great (OT, PT), and that she was alert, but she has been junky ever since I arrived at noonish.  Eyes half open, zoning in and out, completely zonked out of it.

She's pee'd a couple of times but her legs and feet are still swollen.

I'm discourged because I thought things were going to take a turn for the better today.  So, I called for a review of her scheduled meds with the Nurse Manager.  She met with me right away, and the Dr. has approved changes. 

You see, just before we left Maine Med, like last Thursday night, Anne's pain med was changed, by the Palliative Care person, to a long acting (12 hr) oxycotton twice a day, rather than a short acting oxycodone as needed.  I'm thinking that this is catching up with her.  This afternoon she's hardly been able to speak, stay awake, or hold a bottle of water.  It bothered me so much I asked that they put the pain meds back the way they were.  So, she should be clearer tomorrow, and hopefully be able to ask for pain meds when she has pain, and ask for nausea meds when she has nausea.

Regarding the Care Coordinator (Edette Flaker) at Maine Medical, she has abandoned us, and will not return phone calls.  Same for the Palliative Care team I wrote about end of last week.  Edette said they would stay by our side, supporting us after we move, and follow us, rather they never materialized at all, not in any way, and only a point person (Katherine Addicott) ever showed up and only to appease me in a time of duress, till I agreed to let them ship Anne to a rehab facility away from MMC.  I'm done with them.  I don't know how they can sleep at night (in bed with the insurance companies maybe) but I wish them the best of luck.  They basically just bumped Anne's meds, and sent her on her way.    

Tuesday, 7pm

Hi Friends,

Today folks came out of the woodwork.  I had come here with Anne's coat and hat in hand, ready to move her.  I was sure she was in the wrong place, definatelhy not getting the care she needed.  It's too bad we arrived here on a weekend when the place was obviously shorthanded.  The first impression had alot to be desired.

Anyway, long story short, alot of good care came today.  Anne was up on her feet several times, and was given OT and PT while sitting.  The unsafe  recliner was removed today, and the best electronic recliner chair in the place appeared in the corner of Anne's tiny room this afternoon.  She's loving it.

Laurie spent alot of time in here today and I know her Meme loved that.  It is part of the reason we had so much success today.

Nursing managers and shift supervisors showed up to speak with me.  Speech therapists and respiratory therapists, along with dieticians came to see what they could do for Anne.  Heck, we even met the house Dr. Steinbreecher around 5pm (after I had gone looking for her), missing-in-action since we got here Saturday.  I liked her.

It's as if someone had set off an 'all points bulletin' around here, if you  know what I mean.  Something definately hit the fan.  All for the good.

With a little encouragement, the Dr. increased Anne's diaretic med so that she gets one 20mg lasix in the morning, and one at night.  She is encouraged to drink water throughout the day so as not to get dehydrated.  As a result of those things, she has pee'd several times today, and my hope is that the fluid in her body is being moved to where it needs to go, to her vascular system from her extremeties.  I look forward to seeing good results with this in the coming days.  Anne took some steps around the room today too. 

We had so many people coming here to help today that lunch never happened for Anne.  It got cold and she pushed it aside.  I went out and got her something else, and she never ate that either.

Tonight Anne had dinner delivered including chicken and mixed vegs.  Lo Mein on the side.  Apple crisp followed.  As usual, she only had maybe 5 bytes of the meal and covered it up, but she did a fine job on the desert finishing almost all of it.  It looked pretty sweet, and was covered in whipped cream, but miracles do happen, and she's been sleeping like a baby for the past 20 minutes now.  Oh yeah, she also polished off most of a glass of cranberry juice.

I think she feels quite accomplished to have done all the therapy today, to have been on her feet several times, and to have taken a small number of steps.  I am able to get her in and out of her chair or bed by myself now, she no longer needs two CNA's to help.

Progress is being made.  Feels alot better than yesterday.  Anne still sleeps, no pain on her face.  Maybe she'll be up for getting dressed tomorrow.  She'd be happy to do that.

1pm, Monday

Around lunch time I encouraged Anne to move.  I wanted her up sitting on the edge of the bed.  She did it, and sat there for maybe 45 minutes.  I think that is huge progress.  While I sat with her Chief Grovo and Tashia appeared from the town offices, here to visit her.  They stayed 15 or 20 minutes and Anne really enjoyed herself during that time. 

Then lunch was delivered and she got right to it, didn't need help.  She had some water, cranberry juice, chicken lomein, and orange sherbert.  She only had a bit of lomein and covered it.  Then she finished the cranberry juice and the sherbert.  She didn't have pain for some time, but when she said she wanted to get back in bed, and did that with help from the CNA, then the pain and nausea started. 

She hit the call button, then told the CNA she had pain and nausea.  Another CNA came a few minutes later and anounced that the nurse was at lunch and would be back in about 15 minutes.  She would leave a note right on the nurses station for her to come in.  I'm sure it's been 15 minutes now, and no sign of any meds.  Not sure it matters at this point, because Anne is fast asleep and in dreamland now with her mouth open.  Looks like a pretty good sleep.

Opps, the nurse just busted in and woke her up.  Anne asked her for pain and nauesea meds.  Her BP is 107 over 81.  Now she'll fall asleep again, then get woken again to take the meds.  Some time shortly after that the PT and OT people should be in here.

11am Monday

Mornin all,

Sorry for leaving you hanging yesterday.  I took the day off from writing to the blog.  I was here with Anne for 10 hours, watched multiple football games while she slept for the most part, but there wasn't anything much to write about. 

It's Monday and I came in before 10:30 in case Anne wanted to order lunch from the alternate menu.  She did.  We ordered the Chicken Lo Mein.  Ten-thirty is the lunch deadline, and 4pm is the supper deadline.  If Anne doesn't want what's coming automatically from the regular menu, she can order from either the American or Asian alternate menus.

Yesterday (Sunday) was quiet in here for the most part.  No PT or OT person showed up yesterday, or anyone else out of the ordinary.  We have not met the Doctor yet.  The name is Dr. Steinbrecher.  Danny and Darlene, Anne's brother and sister-in-law came in to visit and Anne was happy for that. 

Today Bobby and Deanna, brother and sister-in-law were here visiting when I got in at 10:15.  Anne was glad to see them, and she's been fast asleep ever since they left around 10:25. 

It's concerning to me how tired Anne is, and continues to be.  I've been told to have patience with this.  I don't want her to lay idle too long tho.  She moves between recliner and bed and it's alot of work for her to do that.  Some times she's too tired and not interested in moving.  This concerns me too, for the risk of bed sores and pneumonia from sitting idle.  I'll do my best to get her up, and sometimes into a wheelchair to give her a ride.  She hasn't been able to walk yet, and has been so tired she hasn't left this small room since we got here mid-afternoon Saturday.

The staff was clearly shorthanded here on the weekend, so I'm hopeful things will go better with the nursing aspect now that Monday is here.  Also, I have high expectations for the PT program here.  Yesterday we were told someone would be here this morning sayin "You're in the Army now".  But, no such thing has happened.  I hope they get some work in with Anne this afternoon. 

At this point, we're in a new place, and I'll remain positive, because I know that means alot to Anne and how she feels.

Not alot of news.  Thanks for being there, reading and keeping up with Anne and her progress.   

Moving Day, now 7pm

Hi friends,

Anne was sitting up when I got in at 10am.  Shortly after 12:30pm she was transported via ambulance to Springbrook Rehab, on Spring Street.

She didn't have any lunch today.  She requested nausea meds around 11am. 

Her feet have become swollen again since yesterday for some reason.  There is still alot of fluid in her legs.  We talked with the PT person and told her that was a major challenge, and an obstacle in her ability to get on her feet.  We have her feet up now.

Anne was evaluated by PT, OT, and RT (respiratory) folks here at Springbrook this afternoon.  Then she was very tired, but none worse for the wear following the transportation and interviews.  She's done amazingly well.

We like the PT person we met very much.  Lynne won't be working tomorrow or Monday, but somebody else will.  She gave Anne some excercises to do for her legs.  Anne is motivated to do these and get on her feet again.

Tonight the nurse served both of us dinner in this room.  We had chile, bisquit, cukes, and mandarin oranges.  Anne was clearly dissapointed when I said I didn't want to have dinner, so I caved and had dinner with her.  Glad I did, it was great.  Anne ate her chille, oranges, part of her bisquit and tried the cukes.  I cringed at the thought, but no frown on her face yet, and she's been fast asleep here next to me for almost an hour now.  Knock on wood. 

Prayers were answered today when she travelled well, moved well, and ate well.  Tomorrow she may be in street clothes.  She has alot of work to do and we hope they get right to it.  That's what she's here for, but we must keep in mind what she went thru this past 6 weeks.  Yesterday the palliative care person impressed on me just how ill she was last week, and that she was lucky to survive the staff infection.  She reminded me about the toll it takes on ones body.

Today I complained about the small room Anne is in here, sharing it with another woman named Beth, but Anne said "We'll make it work".  I concurred.  One day she might complain about something.  Maybe when she gets home she'll find something.  I can't wait.

Please pray for Anne to respond to the PT, and to gain strength.

She hasn't needed any meds since we left MMC.  Knock once more !!

Encouragement, finally, noonish

Hi everyone,

Yesterday was a terrible day, 'talking heads' all over the place, all day long, with Anne hurting in her chair.  But enough of that now.  Let's move on.

Anne spent the night in the recliner.  Her choice. 

Today I was so happy to walk in to a smile, and to see her toes wiggling, her feet slimmed down, and her legs noticeably softer and thinner.  It's been such a long time coming.  Looks like the night in the recliner paid off, big time.

She feels good, relatively speaking, but says her abdomen pain is a 5, and she took 2 oxycodone shortly after I got here.  I brought her McDonalds small Mango Pineapple Smoothy, one of her favorites, and she has taken half of it.  No pain on her face now as she sleeps.  She doesn't know it but she is awaiting Physical Therapy who will wake her and work her soon.  The nurse said it's good for her to take pain meds before working with PT.

You don't know the relief I felt today to see her slim feet and legs this morning.  I can't tell you how grateful I felt.  It's been cause for alot of discouragement for some time now, for both of us.

There was a team of folks in to see Anne (before I got here) today (snooze you loose).  Anne said they were called palliative (sp??) care specialists.  Anne tells me they spoke to her about managing cancer pain.  I'm thinking she was well enough to tell them how she's doing, but she actually said her room was full of these folks, and being that she has a huge room she had her hands full.  I'm sorry I missed it, but Anne asked them to come back to explain things to me.  The Care Coordinator had arranged for these folks to come in after I spoke with her and the doctors yesterday afternoon.  I hope they'll seek me out today so I can get their perspective.

According to Anne they still want her to be moved to a skilled rehab place soon.  I'm thinking she'll be able to start that soon.   

I was told insurance companies have alot to do with what hospital you're in, and what care you get, etc..  For example, the blood infection is gone so they want her out of here. 

Another example is how she'd like to go to New England Rehab on Brighton Ave.  We know the place.  She's been there before following her brain surgery, and, that's where she 'volunteers' with Dixie, our therapy dog, to visit patients on Fridays in the summer.  They know her there.  However,,,, there's a requirement that you must be able to do 3 1/2 hours of rehab every day, else you're not eligible.  She cannot do that at this time.  So, we have been told to pick from a list of other places, places we know nothing about.

Well, that's a quick update for this Friday.  I'll write more later.  She is better, but still in belly pain.  We'll be learning more about managing that, and I'm demanding guidance regarding her entire digestive issues.

Thanks for being there, and thanks for you're prayers.  We're encouraged today.  Anne continues to sleep soundly here next to me.

Ugh

Hi friends,

Anne has had another day like yesterday.  I can't sugarcoat it.  The nausea is overwhelming, and now constipation has made things worse.  Belly pain persists, and her frown. 

Anne was asleep when I got in at 11:30, and she slept till after 1pm.  She woke up miserable with belly pain and nausea.  She appeared unhappy all afternoon.  We realized she was constipated mid-afternoon and began to treat that.  I wasn't aware they had discontinued her stool softerner around Monday when she was having some diahreah.

She seemed in agony between 3 and 5pm, then all of a sudden, she was able to relieve herself and by 6:30 she was able to consider the menu.  Holy Cow!  Deja Vu.  Round and Round.  Up and down. 

I ordered again tonight for her because she wasn't really ready to think about food details.  She's getting a humus wrap, chips, strawberry yogurt, lemonade, cherrios and skim milk.  I suppose I'll label alot of that, and save it in the fridge.

While I was on the phone placing her order she asked for a strawberry shake.  They offerred instant breakfast, and she said 'no thanks'.   I went to McDonalds and got the shake.  She drank about 2 inches of that, and ate 4 of the fries I tempted her with by laying them on the tray.  Shame on me.  She's eating the humus out of the wrapper now.  No pain on her face.

I wish I could explain this roller coaster ride she is on. 

Today was her last day on anti-biotics for the staff infection.  Yeah !!  She's survived that.  Consequently, they're considering moving her to a Rehab facility tomorrow, for skilled physical therapy, to get her on her feet.  I balked at the idea because she is so miserable 80 percent of the time, in pain and using pain meds occasionally, along with nausea meds constantly.  They said her liver and kidney numbers are good.

I don't understand why someone with such special and unusual digestive issues is given the 'room service' menu to order from.  If we asked someone what she had to eat yesterday the only one who'd know would be me.  They aren't tracking that in any way.

It seems Anne isn't getting some kind of care that she desperately needs.  I discussed this with the staff today, including her doctor and the care coordinator.  We'll see what tomorrow brings. 

I'd love it if Anne was able to go to a Rehab facility tomorrow, I just don't know how she can with so much sickness, and not being able to walk 5 steps without being dizzy, with exhaustion.

She is enjoying Jeopardy now.  Dozing in and out of sleep.  She sure is a  mystery.  I wish the poor kid could eat and process it.

Down and Up today, ending on a good note

Hi Readers,

On my arrival today Anne wasn't feeling well, and she was said to have had a poor morning.  Feeling badly continued this afternoon.  She had a bad day yesterday, and bad evening too.  Her BP has been fluctuating alot today.

PT came and worked with Anne, from the waist down, at around 3pm.  Anne moved with help from bed to the recliner.  She said she got dizzy, and that her legs were 'tight', very shaky, and that she couldn't have gone any further. 

While in the recliner the Occupational Therapist came, for the second time now, and worked with Anne's arms as she sat. 

Then, all of a sudden, Anne turned into a 'happy camper'.  It was really nice to see her face with good color, a smile, and a twinkle in her eyes. 

Around 5 Anne started to think about food, and we ordered supper.  Her nurse gave her anti-nausea med thru the IV along with the diaretic (sp?).  Hopefully Anne can eat and not suffer tonight.   Will be great if she can stay on an even keel for awhile.

Well, success, knock on wood. 

Anne picked at her chef salad with some low fat ranch dressing.  She ate a fresh fruit salad and drank a chocolate milk.  Then she tried some of her cheese stuffed baked potato.  Walah@!  No pain, and she has fallen asleep in the recliner.  I will head home on a good note.  When she wakes up she get help to go to bed.  The nurse today Celina, did a wonderful job, and put alot of thought into Anne's meds, timing of those, etc..  We'll pick her brain and try to repeat the process. 

Hoping for a good night and good morning tomorrow.

Thanks for being there, for your prayers, etc., etc.. 

Dr. Ebrahim returns !!

This has been an off day for Anne.  She isn't feeling well and one can see it in her face.  She's had a questioning look on her face all afternoon as she looks at (or through) the television.  She has been in a recliner chair since I arrived around noon.  Now it's 8pm. 

We were so pleased to see Dr. Ebrahim return to work today after his mystery illness.  He visited with Anne and me, casually for at least a half hour, and as usual he pulls everything together for us.  He informed us about his absense.  He had a heart attack.  He's back full time, but he doesn't have to be 'on call', therefore no weekend or night work for the next couple of months. 

He told Anne that she is on the mend and that encouraged her.  He told us to not worry about the cancer treatments for now, not until she is up to it.  He, like me, wants her to concentrate on getting on her feet.  He told us her cancer has that specific protien that he had mentioned testing for a couple months ago.  With that, her treatments, should she have them, will change to a drug named Herceptin.  It will be mixed with something else to treat the cancer, and it is less harsh than what she has taken in the past.  It is new.  That also encouraged Anne.

Tonight there's been a big turn around in how Anne has felt all day.  At 5pm she requested pain meds for her belly pain, then she asked for nausea meds.  She got ativan for that and oxycodone for the pain.  Then she began to come around, talk, and smile some.  She was miserable all day, not talking much, and not eating at lunchtime.

She was up for talking about food, so I went thru the menu with her and she asked for egg salad in a wrap.  She wanted to pick at a chef salad so it was ordered.  She got some skim milk and I convinced her to try the apple pie.  She ate very well, some of each, and now she is fast asleep.  She enjoyed it, so it's a pleasant surprise that she isn't suffering now.  Yeah!! 

Jeopardy just ended, so I'll pack up and go home in a few minutes.  When she wakes up she'll get help getting back into bed.

It was a down and up day, ending on a positive note.

Sluggish today, Noonish

Hi Friends,

Yesterday I seem to have taken a day off from blogging.  I missed it.  It felt like I left you hanging.

For various reasons I left my laptop and shoulder bag in the car, in the parking garage all day yesterday.  I wasn't in too early because I had some help from Adam in the morning to move Dixie's kennel out to the front yard, where it now can sit in full sun on good days.  Anne's son Luke beat me in here yesterday.  I took him to lunch and then he left town for home in NY.

Anne is very slow to recover.  It is concerning.  She's clearly not happy when she's tired, and she's tired alot.  She's at her best after she's been able to sleep soundly.  I'm not encouraging any visits outside of family, and brief ones at that.  I've been here for an hour now and she has been nodding out the whole time.  I will sit quietly.  Bobby and Deanna were here when I got here today.

PT was here for a time yesterday afternoon, encouraging Anne to move her legs in beneficial ways.  Then the dietician was with her, encouraging her to eat more protien.  Then she slept nicely and had a pretty good early evening.  She had a banana, chocolate milk, and PB+J sandwich (1/2) for supper, had some pain, then later I left at 8pm, after Jeopardy.


A MMC 'care coordinator' called me today as I was entering the parking garage, then we met.  She's thinking about Anne's next move, whether she needs PT or Rehab, etc..  Once Anne is medically squared away they'll kick her out of here, and we'll want to have a plan for that day.  The care coordinator told me she hadn't spoken to Anne's doctor yet, so I suggested that she do that before we talk again. 

I'd like to see Anne well enough to get up daily, and shortly go to the Rehab hospital (if she needs it) on Brighton Ave.  Hopefully she'll be mobile by then.  It might be wishful thinking, I hope not.  I would not say she's improving in leaps and bounds, and she isn't very cheery today because she's tired.  As I may have said before, she says she wants to go home, but her hips, legs, and feet are still swollen, and she's not up and around in any way yet.  If I can keep her chin up, and keep her focused on 'today', then I think she'll get better.  To think too far ahead now would definately overwhelm her. 

It seems that just having to listen and converse with others is a heavy load for her at this pointin time.  She continues to sleep.  All good.

Late New Years Day, 5pm

Anne has done serious sleeping most of today. 

Last time she spoke to me she was concerned about her legs, with all the fluid in them, and that she can't do anything with them.  I bolster them with pillows, or move them around for her when she asks me to.  I told her what Dr. Evans said, that it would be a couple weeks for them to come back to normal.  I sensed some dissappoined in her, just a little.

I do my best to encourage her, and let her know she'd be like new soon.  It's a slow process for sure.  I'd be dissappointed too.

For lunch she ordered a banana, strawberry yogurt, lemonade, and vanilla ice cream.  She hasn't eaten any yet.  She's so tired, but she is coming around.   

Happy New Year, Noonish

Hi everyone,

(Aside - With year 2012 here, you might loose visibility to the end-of-year 2011 posts.  If so, just click the dates on the right hand side of the screen near the latest post, just below the pictures.)


I'm sitting next to Anne as she sleeps.  According to nurse Tai Anne had a good night.  I know she enjoyed seeing her son Luke who appeared out of no where yesterday.  A good thing...  Tai said Anne spent the morning in the recliner, and when I got here around 11 today she pushed the button and told the nurse she wanted to get back into bed.

Yesterday after having an uneventful lunch her supper bothered her tummy.  Just two bytes of caesar salad w/ a crouton, and one bite of baked mac and cheese.  That's all it took.  She had made a salad at home a couple weeks ago, and it worked for her, so I thought it might be worth a try.  She didn't ask for meds this time tho, she got thru it.  Tai said she had a couple bytes of breakfast today, and it was OK.  Then she struggled with a big potassium pill tho, and she vommitted.  He said he didn't think it was the food that bothered her, rather the pill and I agree.  She has a tough time with smaller pills anymore, nevermind the large ones.   

This eating game is just something Anne will have to live with I'm afraid.  She'll make choices.  She'll either make a science of it, track the good and the bad, and pay attention, or she'll eat what she wants, enjoy the moment, and pay the price.  'It is what it is', as they say.  I don't want to say much, cause I wouldn't want to walk a mile in her shoes.  Once in awhile you just want something.  She'll try, but when she wants something she can have it.

It's Patriot game time.  Anne and I usually set up and watch it together, but she could give a care about it today.  I'm happy to have the volume set to zero, and let her sleep.