The visit to the Internist/Cardiologist revealed an irrigular EKG. Next problem to face is mom has a risk of having a stroke if we go ahead with surgery. She is scheduled for an echo-cardiogram a sonogram of the carotid arteries since a 'swishing' sound is noticable and a stress test...
WE now have 8 Md appointments in the next 15 (working) days 'til the surgery date.
Mom's aware of the possibility of the respirator, now too, thanks to this doc splurting it out. She cried the whole way home from the docs. Her mental acceptance of surviving surgery is nil. Very bad sign since I beleive the mind is a big factor on the will to make it through or not. I personally think this surgery will never happen.
And I, again, await the doctor's phone call to discuss this again. Guess today we are on that crest of the roller coaster waiting with the adrenaline flowing.
I'll add more as I hear it...
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WEDNESDAY, FEB 17, 1999
I am livid. 13 days til surgery date and the Urologist left out of town on vacation and will not be back til 1:00 pm on Tues, 2/23. Left without info of the Anesthesiologist's name, which mom must see before surgery. Left without sedning copies of his report to the Internist (which we signed the release on the 5th!) He did not call me to let me know the blood results either! ALSO- Pre-admission testing set for the 23rd. Still need to get clearances from the other 5 docs! This leaves me with 4 working days to squeeze in 5 Md apptmts~ if they can!!
Friday is stress test and am nervous about THIS! Just spoke to the Internist/Cardiologist and he neve got the comparative EKG so he can see if mom suffered a minor stroke recently or if this has been her EKG for a while..
Don't have sonogram results from last Friday yet either...
Mom had trouble breathing today for the echo-cardiogram.
Couldn't hold her breath for too long from her emphasema.
I am so aggrivated with them all. Internist tonight says 'well, we can reschedule the surgery if it's too much or not enough time". RESCHEDULE? The Urologist claimed mom needed the drains in her kidney done before we go ahead with the bladder removal. When do we do this? *frustration!!*
Blood's boiling. Nerves are shot! They are all just going along like we have tons of time and I still am personally against this surgery.
Also mom, I believe, is afraid to say no to this surgery. Mentioned she "knows the docs will tell her she isn't a qualified candidate". Think she wants them to tell her this so she isn't making the decision of not going ahead with this. I have told her " I am against this surgery". I think she is afraid my brothers will not understand why she is afraid. Need to talk to them.
I know and I will.
Having bad dreams and wierd preminitions. Too long to explain it other than I woke up last Sunday feeling this is NOT the way to go.
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NEWEST UPDATE: SATURDAY, FEB 20, 1999
<11 days to surgery date.. still scheduled for March 2nd>
Yesterday, Friday, mom was scheduled for the Stress test ~ which she refused to do since the 'tunnel' she'd have to be under for the photos would have made her clostrophobic. Plus she was an utter wreck in the morning, anyway, over this.
Went upstairs to the Internist who told her it was fine she didn't. It was her choice not to. Just like it is HER choice to decide NOT to do surgery if she feels unfomfortable with it in any way. aHe told her she will need to go in with a positive mental aatitude, knowing it'll not be easy BUT must feel completely "I can do this" attitude.
AND- if she feels any premonition or just decideds not to, it is ok. No reasons are owed to anyone but herself as to which way she decicdes to go. ( I like this doctor~ very compassionate.
He did more blood work upwhile we were there. Seems potassium levels are a bit high and liver functions above the normal range, too.
Tuesday (2/23) is the start of the pretesting (hospital). Then comes all the other clearances.. so I doubt I can update much here. Will try to, even if it is a sentence or two.
last UPDATE: TUESDAY, FEB 23, 1999
<7 days to surgery date.. still scheduled for March 2nd>
WEnt to all the pretesting, which took over 4 hours, at the hospital today for mom. I think she is going to go ahead with this until someone (meaning a doctor) tells her "NO"....
I am annoyed now. I called the Urologist (who went away for the 10 days... *bleep*).... He is pasing the buck again and willnot commit to being for or against this surgery. Just stresses how high risk she is and that I need to see what the Internist suggests. He just got back, doesn't have info. and all that other BS! He asked me to ask the internist flat out what he thought her chances of surviving this is. Isn't he the surgeon? Where would YOUR confidence be with a doc passing the buck like this????????
So...... I am waiting for a call back from Internist and have 4 working days to set up the balance of appointments.
UPDATE: WEDNESDAY, FEB 24, 1999
Spoke to Internist last night. Here's where we stand...
Internist says the echo looks good, but since mom didn't take the stress test last week, this is stillnot a reassurance allis well. He still hadn't had the results of the carotid artery songram from the 12th, nor the blood results from last Friday, the 19th...
He also still hasn't gotten the past history of mom from the Urologist (who got it from the intial Internist) which was signed for release on the 5th of February... Sounds frustrating? You bet ya.
The Urologist is passing the buck of which way to follow thru by asking the Internist which is the best bet. I was told to ask him the question "Will mom make it through surgery"
My answer? Depends on her attitude. Stakes are high, 50/50 chance.
Surgery is the best choice for cure...
Although she still has the emphasema to worry about.
Lung systems is still at risk. She could wind up with pneumonia, or a ventilator for who knows how long... maybe forever.
One thing they both agree on is that if her attiude is negative, then the outcome may not be good. a 'duh' and yeah to both docs for that piece of medical wisdom.
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NEWEST UPDATE: SUNDAY, FEB 28, 1999
SURGERY IS SET AND SCHEDULED FOR TUESDAY, MARCH 2nd AT 7 AM. Last of the medical clearances came on Friday. Finished the last of the pretesting at the hospital then, too. We need to get mom to the hospital by 5:00 am. I am planning on sleeping over my mom's and both my brothers will go with me and mom to the hospital. Hubby will meet up with us after he gets David off to school.
They did find a low thyroid problem and a urinary track infection that she is receiving medication for right now. It was almost a reason to postpone this surgery for fear that if the thyroid is functioning slow, so are the rest of her organs. But the Endochrinologist has also given her clearance and she is on antibiotics for the infection.
This is being considered a life saving operation to rid her of her bladder cancer. Mom was told there is a chance of her being on a resperator/ ventilator after surgery. She did not take this well at all. As of today, she does not want this.
The odds are 50/50 she will have a successful operation and 10% chance she will remain on a ventilator. The Urologist has also stated he will proceed with the surgery but may not completely go ahead with all he's planned, depending on her condition (stable) or what they find when they open her up.
They are planning on going in intravenously and also with a spinal since mom's lungs are with Pulmonary function disease with emphasema. She would not have gotten this clearance for surgery if this was not considered a life saving operation.
The only good news so far is that the echo-cardiagram and the sonogram of the carotid arteries both have come back looking better than expected, so they don't feel she is 'at risk' of a stroke like they had initially anticipated.
But the lungs are a totally different story... hopefully she will fair well through all this and we wont come across any complications.
I do not think I will time to be online til after this is over. I still need to take mom in for the final 'go over' of the surgery tomorrow. And am planning on staying over her house with her tomorrow night thru ?.
Please keep her in your prayers and pray for a miracle that all will go well. Mom is still down on her weight, but her outlook is more positive to some extent. She is very scared as we all are. I will try my best to let you know how she is doing when I can. I hope the next time I add my update, I will be telling you how well everything went...
Thanks to all my friends who have sent me their big hugs, love, poems and prayers~ you know who you all are! I know you are there for me and I am thankful to you for being such loving and caring people. :o)
It will be in God's hands now.
UPDATE: TUESDAY, MARCH 2, 1999
The surgery is over and mom is in the ICU as of right now. The doctors said she handled it beautifully, remained stable with little blood loss thoughout the long surgery. She is on a spinal drip medication for pain and is hooked up to all kinds of monitors. She seemed alert for just being out of surgery, squeezing everyone's hands and having tears in her eyes when she saw us. We have all thanked God she has gotten this far and pray He keeps her with us so we have her here for many more happy times.
My two brothers and I arrived at the hospital at 5:00am and she went up to the surgical unit around 6:50 am but she actually went into surgery around 8 this morning. During the day, my hubby, sister in laws, nephew, daughter and my niece all came up to wait it out. It has been a very long morning and afternoon. The operation lasted until almost 3:00pm. (It's almost 6:00 and we stopped home to wash up and settle and will all go back again to see her.)
We were fortunate enough to have had the doctors go in and check on her progress and personally come down to report to us thoughout various times during the surgery. Each coming back with a good report.
The doctors removed the cancerous bladder and the uterus and overies as well. The 'new' bladder has been formed from her large intestine and part of the bowel. The kidneys were almost in shut down and thankfully they have put in tubes to drain these. Some bad news is they believe there may be cancer in the lymph nodes. Biopsies have been taken and we wait for these results.
The good news is she has gotten through this part very well and she also, so far... is NOT ON A RESPIRATOR! This was a MAJOR concern for mom and almost seemed an impossibility she is OFF one. Of course, Doc says they need to keep checking her lungs and hope it remains this way. (Of course a tube is still in her nose to drain, her kidneys, too, for drainage, and a few other scary tubes in her as well.)
Mom is in the Recovery Intensive Care Unit at Winthrop Hospital for now, possibly through tomorrow night. Hopefully she may be able to step down to another unit tomorrow. (She needs monitoring for a few days). She has gotten through two hurdles so far. The surgery and the no-respirator. She is not out of the woods yet... We have a crucual few days ahead of us. Please keep her in your prayers and I will try to update as I can.
Thanks so much for all your prayers, cares and concerns...
Wednesday, March 3rd...
Quick add on.. Saw mom last night and she is talking a bit. She is very nauseous, and still in a tremendous amount of pain. They have pressure cuffs on her legs for circulation, too and she is hooked up to all kinds of monitors. She seems stable enough- so far. Next few days are very critical... Her lungs so far, seem good. As of this morning, mom has had a good night. Will be going up to visit the ICU shortly.
To add to all this, hubby wound up in the ER last night after almost passing out when visiting mom again. He got white, sweaty and totally disoriented. Wheeled him down to the ER room and after testing, they found nothing other than maybe stress and fatigue, possibly some shock due to mom's condition. (she is full of tubes and they were irrigating her stomach, injecting some medications, etc. at the time)
Don't get me wrong here, Larry is NOT like this. He even asked if he could watch the surgery for his Carpul Tunnel when they do this next month. But he has been suffering all week with terrible back pains and saw the doc himself on Monday. Doc said maybe not stones, but just a wrenched back. No connection with each other and fortunately, he was released last night and is ok.
Will fill in on mom after I visit this morning.
(3:00pm update) Just came back from this morning visit and all is the same. No major changes either way..
Friday Morning, MARCH 5, 1999
Sorry I didn't get to update since yesterday. Seems Optimum Cable shut me down all day yesterday...
Anyway, as of last night, mom has been placed in a 'step-down' ICU Unit. Nothing has changed too much, she is stable. Her spirits are up and she is a feisty liitle lady. Rightfully complaining and sharp as a tack! Too sharp it may seem!
Found out she had also had her appendix removed during the surgery since it was directly near the opening of the conduit for the reconstructed 'bladder'. (mom will have a bag that will be attached to this on her pelvic region). Well, mom hears this and quips "They better not charge me for the appendix removal since I didn't request that to be removed!" She also told us what time her last morphine dose was and that she was again and she was right! (sharp lady, huh?)
They removed the circulation wraps on her legs and mom told us "Shh. Be quiet about it before they remember and place them back on". (A few hours later they did place them on her again.) She hated these things since it pumps up with air every 45 seconds and then releases, apparently a very annoying thing to have on her legs.
Another thing we learned was that the uterers (leads) from the kidneys were so swollen, that she would have had kidney failure at any time. Instead of being a string like thickness, they were maybe the circular width of a nickle due to the tumors closing off these leads! The cancer wouldn't have killed her, the kidney shut down would have.
As for mom's condition... They are still concerned about her lungs and she need to keep trying to move these balls to exercise them or she may contract pneumonia or wind up on that respirator if they don't see improvement.
Yesterday, they have had her out of the bed to sit up for a while so she could cough to break up the chest congestion. (She complained they left her there tooooooo long.)
And they also felt it was necessary to give her another blood transfusion.
The biopsies from the lymph nodes has still not come in yet, so this, too, we wait for. If they come back positive, mom still may need that chemo and radiation.
She is still with all the external leads in her neck and back and is being fed a super-duper IV thru one of the tubes in her neck. (For vitimins, etc and also her lipids are still very low.) When the bowels begin to function, they feel that then they can remove the tube in her nose and begin some oral food intake.
She is in this other ward of ICU, but this time she is in a quieter area of the hospital. We were even able to set up a little TV for her to help pass the time so she wouldn't keep taking nite of every single minute of the day.
I will be back to visit again in a bit and hope all is stable if not better. Thanks to all of your wonderful prayers and well wishes. Keep them up. It seems like the 'Big Guy' above is listening! ;o)
*** Still Friday, just later on...
Mom is off the oxygen face mask and only has the oxygen thru the nose now. They also took out one IV from her hand. Giving her another blood transfusion today, too. She was again in a chair for a bit. She may get stomach tube out tomorrow or Sunday. Still in ICU until she or they feel she doesn't need the spinal morphine med.
It is still in God's hands... but He is being kind and letting us have mom with us for a while longer it seems.
Thank you... thank you... thank you (!).
UPDATE: Monday, MARCH 8, 1999
Mom is still in step-down ICU, stable for now. No major changes, which appears to be good news~~~~ thank God. Even the doctors are so very impressed.
She is off oxygen and they took out the spinal drip for morphine last night about 9 pm. One step and day at a time.
She is still very nauseous (mostly from all the meds) and has the stomach pump on since her bowels are still have not begun functioning. We are awaiting the results from pathology also~ no word on those lymph nodes. (Guess it is so true, you never do get anything accomplished over a weekend)
Her spirits are rather good. Mom "flipped us the bird" a couple of times, so we know the medication has her a bit loopy ;o). If you know my mom, she doesn't even curse and never gave any of us the finger in her life. So... if this is how we know her spirits are up, she can give us the finger anytime!
More later hopefully. If all goes well, she may be in a room by tomorrow... Keep those prayers and well wishes coming. Thanks to all who are sending them our way...
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UPDATE: Tuesday, MARCH 9, 1999
As of 5:00 last night, mom got moved out of the ICU unit into a private room! She is still very much uncomfortable but is moving along with all just fine. biopsies still not available and she is still with the stomach tube, but the doctors say this is not unusual considering the extent of her surgery.
Momhas a TV still hooked up, but the family and mom agree that there will be no phone since she needs her rest.
Will go up and visit and report any changes later...
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UPDATE: Wednesday, MARCH 10, 1999
I got a phone call from the hospital this morning informing me that my mom had a seizure during the night. They believe it may have been drug induced from the the demorol.
They did a CAT scan on her and the Neurologist was called in to do blood workup to see if and what damage may have been done. This afternoon they will be doing an EEG (brain scan).
Mom seemed more alert than yesterday (not he 'sharp as a tack' alert like she has been, but they are saying the demorol is most likely still in her system) and it doesn't apppear there was any brain damage, but we wait on these test results to see for sure.
We had a 'Touch Therapist' in for her to help relive the pain. don't know if we all believe in this, but , hey, you never know and it doesn't hurt to try anything...
GOOD NEWS... Mom passed gas this afternoon, too. Seven times. They've disconected the nasal/ stomach drain to see if she can handle it. The tubing is still in her nose just in case she her stomach blows up and they need to be really sure the bowels are beginning to function on their own.
Mom is asking for jello, a glass of soda- all good signs. the poor woman is looking for food! Just hope the body can handle this.
And we take it all 'one day at a time"...
UPDATE: Wednesday, later... MARCH 10, 1999
Yesterday and last night, mom did not do so well. Her status seemed ok, but her coloring was terrible and her pain level was very high.
Mom is on Demorol instead of the morphine drip and this medication seemed to make her to be totally out of it- asking to be pit back in bed when she was already in it or asking the nurse to give her her shot when she had just received it moments ago.
We had to call the doctor to recheck her since this is not how mom jas been for the past 7 days prior. They seem to feel the gas is what is causing allher pain. Unfortunately, mom is really so very much in pain and it hurts to see her this way. She is saying she can't take it and we are all worried and oblviously concerned right now.
The doc assured me he is going in this morning to check her over and I will go up in a little while myself to check in in her and see if she is a bit better. They feel they wil go back to the morohine and stop the demorol since demoral is a deterrant for relieving gas--- something mom still needs to desperatly do.
No word ont he biopsies yet either. And she still has her nose tubing and her stomach pump and the IV feeding tube in the neck. Mom has not had solid food since Feb 28 and we pray the gas passes, that the bowels begin real soon so she can begin her nutrition orally and we can get mom going on a better, happier, less painful life.
We can only pray she gets through this rough and painful time as soon as possible. Please keep those prayers coming. We still need "Him" to help us and keep an eye over mom...
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UPDATE: Friday, MARCH 12, 1999
Hi to all. Finally getting an opportunity to get on here to update...
Lots have happened- First off, it seems mom suffered no visual problems from the seizure, although the tests have not come back (the CAT scan, blood work-ups and the EEG). She seems to be much more alert without all those pain meds. They dropped her morphine level to very little to may be just Tylenol soon so her mind is not clouded like it was with the demorol.
The family has gotten mom to walk around more than just from the bed to the doorway! She made it around a corridor.. shuffling slowly along with her IV pole. (We double gowned her so her skinny butt wouldn't show... )
The biggest news is mom finally passed gas. (Amazing to see adults & nurses cheering that your mom farted- but you all truly understand what a wonderful accomplishment this is & was!!!!) Since the gas went thru her system, this means the bowel has begun to function on it's own. (And we joke we are all glad they 'connected' all the tubing inside the right way or otherwise she may have farted thru her bellybutton or something)
Since mom did pass gas, they disconnected the nose tube/ stomach drain for almost 24 hours to make sure her stomach didn't fill up with gas and that all was still functioning.
As of yesterday afternnon, all was well, so they removed this and mom finally got to have her jello and drink a full cup of water instead of chewing ice chips she;s been beggin for! Her reward for walking around has been getting to eat lemon italian ices. Of course she has savored every moment of this yesterday the same way a person on a desert would be in their glory to have a real drink of water!
It is possible by today or tonight, they will allow her more solid types of food.
The feeding tube is still there as a supplement and she has the oxygen nose tubes back on, just as precautionary. Mom's spirits are much better since Tuesday, except for the fact she is quite sore on her knees and elbows and she has a terrible lump/bump (from the spinal combined with it possible being a bed sore) on her rear end which is being watched carefully.
Mom has a way to go but everyone at the hospital agrees this woman is a fighter and a very strong person for being such a tiny lady. ;o)
I'll add more info when I can...
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UPDATE: Monday, MARCH 15, 1999
(hubby's birthday today..)
Well, mom has taken on a turn for the worst, with great depression and not eating properly. All have been removed from her body, including the IV and feeding tube thru her neck.
She has been arrogant in sending away the physical therapist, has lied about what she has eaten and is continualy throwing up jer food. Her nutrition is nil. Her mental, positive attitude is in the toilet.
We have had our hands full hoping she can get through tis and help herself, since she beat all odds in even surviving this 6 hour surgery with out any kind of problems , spending 14 days in the hospital and beating the odds of being on a respirator! Now we have the mental depression to deal with.
Medically, the docs believe she can go home. The family is in agreement she needs 24 hour home care since she barely makes it to the bathroom unassisted and that's about all she is physicaly capable of. Hospital cannot keep her in any longer if medically she seems ok.
The biopsies reveal the cancer is there in the lymph nodes. What course we take next will depend on mom's well being and nutrition. Right now it sucks. (Do I sound totally disgusted????)
So.... we see what is next. If she comes home tomorrow, may not be able to update for a bit.
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UPDATE: Wednesday, MARCH 17, 1999
Happy St. Pat's Day to my Irish friends
Mom came home yesterday from the hospital at 3:30. Mixed feelings about her release. The surgery seems to be healing quite well. Mostly with our reluctance of her well being, is in her nutrition- or lack of nutrition. I was out of my house for over 11 hours yesterday and needed to return so many phone calls, I just felt the day sweep away for me.
We were basically forced to get a 24 hour nurses aide in that cost a bit much (unfortunately out of our pockets), but we hope it'll help mom want to get rid of her faster. She likes her privacy in her own home. We also felt their may be some medical circumstance we may not be able to handle, so it was agreed among the children to go ahead and hire her. We know there was cheaper places to find home care, but time was of the essence too.
(Medicare only pays for a 2 hour nurse and bath aide, who is also coming in daily or every other day for now. )
The woman is a big lady who seems qualified enough and mom has accepted this set up- reluctantly, maybe, but without too much protest, thankfully.
Mom does not know the lymph nodes are cancerous and we still have a long road ahead with deciding which way to go- chemo & radiation or just one or the other. Right now her mental attitude is that of one very depressed, so she is unaware of more steps needed in this area.
We bathed mom today (and gave her a good hair washing, too) after the 2 weeks plus of not being able to shower due to the surgery incision. I think this will help her mental attitude.
She also seemed to try to eat a bit more and so far, it has stayed down her system.
One day at a time here still. Keep praying she gets back to her old self. We are all still not sure the seizure hasn't affected her. She seems slower in her thinking and her spirits are in a depression. We are hoping home base and visitors will perk the little lady up somewhat. Only time will tell...
Hoping to update with better news and mom in better spirits soon. Thanks to all who have written their good wishes. I have been absolutley back logged the point of signing on, updating, glancing at a mail or two for maybe 10 minutes and signing off. Almost 500 emails await my attention. Sorry I haven't written my 'lol's', small messages of thanks or even the 'thanks for sharing' messages.
To say I have been at a loss of free time and a bit stressed is an understatement. If hubby saw me on here now, he'd be a bit upset, since he wants me to rest a bit. I also still have not even finished my February bills. (March? Is it here already????? OMG! :o) ) They await me and I don't even want or know where to begin getting to them.
HUGS TO ALL. BILL TIME!
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UPDATE: Friday, MARCH 19th, 1999
Mom is home since Tuesday afternoon... still has the 24 nurses aide helping out. She seems to be able to eat and hold down food, thankfully. Her spirits are a bit better.
She is still unaware of the lymph nodes and the diagnosis. We will hold on telling her for another week or so, until her depression eases a bit.
The 'stoma' seems to be shrinking up like it is supposed to and the incision looks wonderful. She still has a problem with the (almost) bed sores that were attempting to form. But for the most part, she seems to be coming along and pray she gets up and walking more and more on her own, without the aid of the walker.
So for now, all is stable. Will update more when I get an opportunity. Thanks for all the wonderful mail and well wishes. I am passing them along verbally as mom is home bound and not living with me at my home. Hugs to all!
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UPDATE: Thursday, MARCH 25th, 1999
Sorry for the long time between updates here, but no major changes for mom and her status. Home since March 16 th with a 24 hour aide present to help her out. Unfortunatley medicare doesn't pay for this so we are looking into one a bit less expensive. This one is $130/ day times the 10 days we have her... Found another agency and tomorrow a new woman comes in- this at $350/ week. Hope she is good!!!!
Seems she is extremely depressed, which doc's say is quite understandable. They wont prescribe anything as of yet since she is on so many medications and because of the seizure which they feel was a demorol induced reaction.
She has a loss of appetite and is constantly nauseaus, which may be due to the seizure medication she is on.
Went to the doctors yesterday and mom is at 92 lbs. Very good considering all they removed form her body and she must have gained a couple of pounds to be at the 92 lb. level. All her symptoms seem normal for a woman of her age and how big of a surgery she survived. Insicion looks good. (Almost) bed sore is healing slowly. Her body is very much in pain from everything shifting into the open cavity from the bladder and hysto removal.
I wont be visiting mom today since I am sick. All the aches, pains, coughing, head swimmies, achy joints, etc... Going to the doctors later to see what's up. Guess it caught up to me.. yes, you ALL warned me, no lectures!!! lol. Need to get better for the weekend so huby and I can celebrate our birthdays we missed celebrating! (his was the 15th, mine the 23rd)
UPDATE: Wednesday, MARCH 31th, 1999
Late in writing this update since I've been feeling under the weather with bronchitis, glands, etc. and no good amount of time to update... BUT:
MOM IS BACK IN the hospital...
Seems she has not been right since she came out. Concerns were nausea and diarreah, not eating, no appetite, the 'almost' bed sores, pains in her abdominal regions, color grey, depression, no lust for life. You name it.
Wednesday, my sister inlaws took her to the Internist who seemed to think all was ok, normal, etc. He took blood workup. Bye, see ya. You're OK.
Thursday she seemed worse. So tired, no energy and mom began slurring her words, more diarreah, chest and throat burning. By 1:30 am she seemed a bit better again.
Friday she seemed a bit better.
By Saturday evening, mom began all the vomiting and diareah again, her mouth was white and full of white blisters and running a fever. Weak, listless, dizzy, very grey. The stoma area has this cottage cheese gunk allover in the bag and floating in the urine. My sister in law and I took her to ER and was there til 5:30 am until they admitted her. They did a bunch of blood workups, chest xrays and a EKG in the ER.
Ok. What's wrong?
1st) They believe it's an internal infection coming out all over causing all her all her pains and fever. solution? try anitbiotics like ampicillin
2) The stoma is full of bacteria causing this yeasty-cottage cheese secretions. solution? hope the antibiotics help here too.
3) Mouth? thrush, maybe herpes, doubtful on herpes, but being careful.
4) Sore throat? From the mouth that now begins to have blood blisters. solution? A swish and swallow medication.
5) Bed sores have ruptured causing mom tremendous pain and moaning from even just turning on these.
6) Vaginal and rectal area all raw and almost infected. solution? Zinc oxide cream and ointment.
Now, yesterday (Monday) they move mom into isolation. They find she has 'staphylococcus aureus'~~ a hospital diesease which most likely came from 'open wounds, sores or itravenous lines'.
Ever feel like a hospital can make someone sicker?? Well, it is VERY possible they sent her home with this lovely condition and mom's misery was from something she got from the hospital!!
There are many different strains of this and this staphylococcus is resistant to ampicillin, the initial antibiotic. Not sure how bad this one is right now. Internet research comes up with hospital stays from 4 to 12 days on an average. Some cases can be actually fatal, but we don't feel hers is this severe. Will update as I can...
Good Friday, APRIL 2, 1999
mom actually ate a half a sandwich last evening and we got her to take a CAT scan!! Miracles, she is or may just be starting to cooperate a bit. Although it seems she will need to go to a rehab center since nutrition is still extremely low and her depression is deep. Going back for a visit in a bit. No other major changes for today...
UPDATE: Wednesday, APRIL 7, 1999
Still very tied up with mom who is unfortunately, still in the hospital (going on the 12th day...) We take a step forward, and then one backwards.. So there's some good news, and still nothing changing news...
She is finally eating a bit a regaining some stregnth.
We are discussing a rehab facility.
She is in dire need of a lot physical therapy
for her legs which are so very weak and we worry about atrophy. They have really been slack on getting those legs in better shape~
Appetite wise, she is finally eating well! They have mom on an appetite enhancer, something called 'mephace' (not sure of spelling) but it is WORKING! She is actually eating three meals a day!!
Docs have her on a 4th and 5th different antibiotic which is finally working! She will remain on antibiotics
for at least 6 months the docs say since the staphalococcus will
remain in her system for that long!!!
They would like to stop the intravenous antibiotics. Mom is still getting the glucose IV, both antibiotics and the heparin intravenously. Veins are blosing so they now are taking blood fromthe thigh area. Poor mom!
They have not answered anything about the blood clot in her kidney. She is still on cumadin and heparin and of course, needs to be very careful with any cuts or bruises.
The bed sores are healing up thankfully!!
And we wait. She has been in for 11 days now
and still in isolation, which means we cannot even transport around the hospital hallways. She is getting a bit nutty staying alone in the room, but the family here all tries to occupy all the visiting hours available and then some- thus the reason I am so busy, too.
Depression is deep set (understandably with mom) and we are dealing with this the best we can...
Just wanted you to know I am still around,
but very little free time!
So much mail-
no time to catch up!!!
(boo hoo...)
Love & hugs, Pam!!
UPDATE: Sunday, APRIL 11 1999
Friday, April 9th mom was transferred from Winthrop Hospital to a rehab center, called The TownHouse in Uniondale. Apparently, the doctors have listed her 'medically stable'~~ not that we all here in the family agree...
The TownHouse is a very nice facility which almost appears looking like a Holiday Inn, except of course, for all the people in their wheelchairs mulling about or being pushed here and there.
Mom's first impression to us was "I don't like this place! Everyone is in wheelchairs!". Which of course, OUR response was "Gee Mom, And are you dancing? We didn't put you here... you have put yourself here by not responding to any physical therapy when ever they came. When you start to begin being even able to walk from the bed to the bathroom unassisted, we'll talk about letting you go home. Your choice."
Next day, we walk in and her first words are "GET ME OUTTA HERE NOW!!!!!!!". Our answer? When you get yourself up and out of this bed, mom. It sounds harsh, but mom is like a child right now... We are all working together to get her back in shape!! ;o)
She is miserable, complaining BUT- she is finally eating at least 3 meals a day. She has many paths to cross (like she still is unaware she has cancer inthe lymph nodes and need to undergo chemo and radiation, but first things first.)
You know the expression of 'tough love'? That's where we are at now. This is not my mom. My mom is one that is independant and ever going out to play cards, Bingo, Atlantic City. Hating to be home. THIS mom is losing all her will to get better and thus, tough love must be given to a point.
Mom almost died from her lack of eating after the surgery. (She survives a major surgery with basically flying colors and amazes the medical staf. She pulls through without a respirator (another ALMOST guarantee) and then decides to give up!!!!
That 10 days between hospital stays, mom fought us every step of the way to help herself. We allowed her to rest, relax, be miserable, feel sorry for herself. Do nothing. Vegetate. Not go into her own bed to sleep. Pay $130 a day for a 24 hour aide. Not get dressed every day. Too many things we allowed since we felt she was in such pain and endured this extrememly life threatening surgery, she "deserved" to feel the way she did. She was totally giving up in food. Dehydrated and labled 'anerexic' and 'bulemic'. Now we fight to get her back home and (hopefully) to some normal life again. Game plan at this point is hopefully 30 days. Tough love.... and of course, the regular, warm hugs too. We're not that mean..
Will be back with more info as I can...
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UPDATE: Friday, APRIL 16 1999
Been a week since mom has been moved to the rehab facility and the trials
and tribulations keep going. Again, some good news, some bad news,
some no change news...
Her condition is a bit better, but none the less, basically the same.
Physical Therapy is working on her legs to get them back to walking
around unassisted and somewhat making progress.
The meals that are served are some how not 'mom's cooking'. It's no
wonder since most days it's not much more than a quick fix 'soup &
sandwich' most nights, maybe a hot one every other night and snacks of
day old bread and 2 slices of cheese. Breakfast seems to be the best
meal of the day, according to all the residents there. Oh, but of course,
you can always choose the alternate- egg sandwich every day! Very
unappetizing considering the facility is actually a $100,000/ yr cost per
person place!
Thank goodness this is just a stopping rehab for my mom. A lot of
residents there have chosen this as their home for the rest of their life.
Should this have been the case for my mom, the cost was what I
mentioned above. $100,000 a year. For now Medicare pays up tot he
100 days, if needed with her AARP supplement. What kills me is if mom
was a MedicAID person, she COULD reside there for life and it would
cost nothing.
What all this means is that my dad worked his ass off all his life and if
(God forbid) something ever happens to my mom and she needs this care
facility, all their assets they worked and struggled so hard all their life for,
must be turned over. BUT, if he was a derilict, had little money in the life
long bank account, say of less than $3,500 is what I am told... then she'd
be Medicaid supplemented and be able to live there- no cost! Makes you
wonder why you struggle. Or why my dad worked a 14 or 25 hour day so
they could live happy, only to maybe have to turn it all over. How is it fair
for the husband who barely provided and can have the same care? OK,
off my soap box. I hope mom never has to LIVE here anyway.
BACK TO MOM and not the facility... Most of these nurses are nice,
some have that 'attitude' and then you have a few who are downright
heartless.
Reported a nurse who allowed my mom to lay in her own urine because
she'd "have to wait for the 7:00 am shift to change her bed". Seems the
urology wafer on her body deteriorated and urine leaked all over her night
clothes and her bed. It was only 5 am...
Earlier that evening, we had been up and disconnected mom from her
overnight urine bag so we could move her about in the wheel chair. (A
samll pouch is attached to her body and it has a little drain valve on the
bottom which can be attached to a larger bag which hooks onto the bed's
frame- it allows for no buldge near the pelvis and not having to worry
about getting up during the night to empty it since it drains below).
ANYWAY, Mom was dressed and we left her for the evening with just the
mini-pouch, not rehooked back up. Mom gets undressed for the evening
and calls the nurse to hook her back to the overnighter. Nurse's answer?
"Well, if your daughter disconnnected you, then why didn't you have HER
connect you back again?" (arrogant ATT-ti-tudes!!)
Straightened out THAT witch... straightened out a few other wondrous
problems mom has complained about... and so far the past two days they
have been very attentive. Mom was so deathly afraid of repercussions
from the nurses if I reported them. My attitude was a bit different. My
feeling was that now they'd know the family won't accept any more BS and
mistreatment from them and WILL report ANYONE that treats my mother
like garbage. Guess my theory worked better than hers. All is well so
far. ;o)
Enough of my soap box (again!). She will have a phone hooked up by
Monday and I have told all her friends the number and encouraged them to
go and visit away. She needs the contacts of her old, normal lifestyle.
The 'will' of getting out of there is beginning to surface. There actually
MAY be some hope!
Of course, we still all need to address the remaining lymph nodes and the
cancer, but first things first. "One day at a time"...
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
UPDATE: Friday, June 18 1999
It's been 2 months since my last update...for good reasons.
First: very little time...
Last: No major updates, either very good or very bad.
So... this is the latest!
Today, we bring mom home from the rehab center!
She was crying this morning when I spoke to her.
Seems like we weren't really progressing or digressing there and the
comforts of home is always a welcome sight for anyone. Hopefully, mom
will thrive and flourish on her own home surroundings.
We have hired an aide to be with her for most of the day, 7 days a week.
Medicare is helping with about 20 hours of this cost, thankfully.
Mom will have a wheel chair for the bigger outings, a walker if needed
onthe shorter ones, and she is capable of handling herself for the short
ones, with a bit of support.
She is up to almost 89 lbs. which is a major accomplishment on her end.
Hopefully, she will fatten up more!
She is still in need of another CAT scan to see how things are doing
internally with the lymph nodes. And she needs to be in constant contact
with the Internist, the Urologist, Oncologist, infectctious desease doc and
last, the thyroid doc.
For the most, mom is holding her own and we feel she will be happier
home.
So.. the numerous hours on the phone this week and last, is now a reality.
Mom has beat the odds back in March surviving her surgery, beat the odds
with the staff infection, worked through the estimated 30 day stay at the
rehab which extended to 9 weeks. And now, she gets to sleep in her own
home and bed!
I will keep all posted as the days pass along. With hopefully more good
news and better prognosis'.
In the meantime, thank you to all who have written and asked always
included the little footnote, "How's Mom?".
I thank you all for the love and well wishes sent, your wonderful support,
letters and mail and especially the big hearts you all have to share with me
and my family!
Hugs and love, Pam
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~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"Lady in Nursing Facility"
What do you see, nurse, what do you see?
Are you thinking when you look at me
A crabbed old woman, not very wise;
Uncertain of habit with far away eyes,
Who dribbles her food and makes no reply
When you say in a loud voice "I do wish you'd try."
Who seems not to notice the things that you do
And forever is losing a stocking or shoes;
Who resisting or not, lets you do as you will
With bathing and feeding, the long day to fill.
Is that what you're thinking, is that what you see?
Then open your eyes, nurse. You're not looking at me.
I'll tell you who I am as I sit here so still.
As I move at your bidding, eat at your will;
I'm a small child of four with a father and mother,
Brothers and a sister who love one another;
A young girl of sixteen with wings on her feet,
Dreaming that soon a love she'll meet;
A bride at twenty four, my heart gives a leap,
Remembering the vows that I promised to keep;
At twenty-five now I have young of my own
Who need me to build a secure, happy home.
A woman of forties, my young now grow fast.
Bound together with ties that should last;
At fifty, my young sons have grown up and gone,
But my man's beside me to see I don't mourn;
At sixty once more babies play 'round my knee
Again we know children, my loved ones and me...
Dark days are upon me, my husband is dead.
I look at the future, I shudder with dread.
For my young are all rearing young of their own,
And I think of the years and the love that I've known.
I'm an old woman now and nature is cruel.
'Tis her jest to make old age look like a fool.
The body, it crumbles, grace and vigor depart.
There is a stone where I once had a heart.
But inside this old carcass a young girl still dwells,
And now again my bittered heart swells;
I remember the joys, I remember the pain
and I'm loving and living life over again;
I think of the years, all too few, gone too fast
And accept the stark fact that nothing can last;
So open your eyes, nurse, open and see
Not a crabbed old woman.
Look closer, see me!
sent by Finsnskins- 4/99
author unknown
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Sharing a smile or two between all the stress...
When mom first went into the Recovery ICU, she was placed under a bright light. When she opened her eyes, the first thing she saw was... you guessed it- a bright, white light! Thank God it was just the florescent lighting in the hospital!!!
While waiting during surgery, strange things go through your minds. We thought it might be funny to dye our hair very grey and add wrinkles and walk in to see mom when she came out of surgery and into recovery. We figured we'd let her believe she was in a coma for about 10 or 20 years and we were alot older. (I know, this is very mean... but we needed to plot SOMETHING to keep our minds busy while we waited out the surgery..)
~~~~~~~~~~~~~~~~~~~~~~~~~~~
~~~ 
~~~
~
Dearest Mom.... ~ 
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