Update

So, as most folks figured out, mom made it out to Kemptville.  Well, good news, she arrived back home this afternoon.

Just to give you an idea of the inefficiency I've been combatting, let me tell you about just one example, this one at least with some irony at which to laugh.

When mom went in the hospital in the early part of June, all the programs that had been put in place for her home care were immediately cancelled (standard operating procedure) including keeping the equipment that had been loaned to us.  Now, to be fair, on one of the days prior to of June 12th, OMG (Ontario Medical Supplies) called at about 10:00 in the morning (while Michele and I were at work - mom of course was in the hospital) to say that they would be at the house that day between 1:00 and 2:00 to pick of the equipment.  Of course, nobody was home for either the message or the equipment pickup. So, when was the next date arranged for pickup?  Yep, this past Friday; I did mention to them that they might want to wait because mom was coming home on Monday but they had to come and get everything regardless of that detail.  Well, mom got home about 3:00 this afternoon and low and behold the equipment was delivered back at about 4:00.  I'm slowly learning to just shake my head at the idiocy of the system.  For those of you who are familiar with the film Saving Private Ryan, you'll appreciate that the term FUBAR come to mind.

Mom certainly enjoyed all the visitors she had over the past few weeks; feel free to visit her at home (maybe just call first to check if she has any appointments on her schedule).

Latest Information

So, mom’s stoma has descended from its proper position and is no longer functioning properly; this means that her condition has reverted to what it was when she originally went to the hospital back at the end of February.  Surgery would normally be performed to make a repair, but the surgeons have rejected that option because the interior condition of mom’s abdomen makes success highly unlikely, and because the mortality risk associated with performing surgery on a person in mom’s physical condition is quite high. 

Mom was insistent that she would rather face the risks associated with the surgery than continue existing in the manner in which she now finds herself, but the doctors have refused to comply with her wishes.  The treatment plan is to maintain an intravenous antibiotic regime, along with nursing assistance to deal with the other aspects of her illness.  The General Hospital has arranged for mom to return to KDH and we expect her to return there this week.

Mom continues to enjoy the visits and cards from friends and family;  anyone planning to visit mom should check with the hospital prior to doing so as the transfer back to Kemptville can occur at any time.

As well, Michele and I appreciate the support, and many offers of assistance that people have made.  

Apparently, the left hand doesn't know what the right hand is doing.

Surgery did not take place today.  Mom has again been passed from one doctor to another; the newest Dr. wasn't in today so the surgery was postponed until he does an assessment and consults with me.  Meanwhile mom has been in holding pattern in emergency, unable to drink or eat, in case they do decide to do surgery (don't ask me the logic behind this).  Doctors don't tell nurses what they are doing nor do they tell each other what they are doing.  Can't believe the public gets more up in arms about the shape of the education system than they do about the quality of the health care system.

More Surgery

Mom is going to have another surgery, scheduled sometime today (Wednesday, June 5). 

Her colostomy stoma retracted resulting in feces being discharged into her abdomen and causing an infection.

She went to KDH yesterday from where she was sent to the General Hospital in Ottawa.  We found out at 11:00 pm that surgery was necessary to rectify the problem.  

So, mom is back in hospital – the home care plan is automatically cancelled when that happens and we will have to wait to see what happens next.  I imagine she will be in the General for a few days and then transferred back to KDH  for further recovery (the city hospitals like to turnover patients as quickly as possible).

I will post surgery results as I am able.

Mom is home!

Mom arrived back home late in the day on Tuesday.  We have had three eventful days with nurses, therapists, support workers, case managers et al coming to the house and getting mom's program set up.

Visitors are welcome, maybe give a call ahead of time just to make sure that some worker or another isn't going to be here the same time as you.   Mom's support worker can check the calendar to make sure there isn't a conflict in the schedule.

Thanks again for all the support and affection, mom appreciates it all!

Possible location change

Mom appreciates, and has thoroughly enjoyed the visits from family and friends she’s had over the past couple of weeks, but if you are planning to visit her this week, you should check with the hospital to make sure she is still there as we are working on a location change.

Mom’s patient status has changed from acute care to alternate care.  This means that she no longer requires the monitoring of a hospital setting, but cannot cope independently.  The options available are: retirement home, nursing home, palliative care, and home support.  At this point, mom’s condition is not suitable for either a retirement home or palliative care so that leaves us with nursing home or home support.  

While mom is somewhat apprehensive about the level of support she will get at home, that is the option we are working towards as long as we can get the assistance needed.  We may be able to get eight hours of support per day which would cover when Michele and I are at work; once we are home we would take over for the remainder of the time.  If mom’s condition qualifies, this type of support is available only on an interim basis and diminishes to 15 hours per week by the end of 60 days.  That is the immediate plan and will hopefully be in place later this week.  Since we will be done school about the same time the support drops off, we should be able to keep mom at home for the summer at least.

Some Clarification is needed

I had truly hoped that by putting information out about mom in a single source would enable interested people to access the information and pass it on to others they knew, but who might not have access to the internet.  To me, using the internet to make the first contact to spread the information is just a natural extension of the tradition where one person would be the phone contact and receive information from the primary individual(s) involved, and then act as the disseminator, passing information on to others. I truly don't understand how talking to me directly rather than to another concerned person who has received the information I've sent out has any bearing on the information that's being disseminated. Forgive me for being selfish, this works for me and my finite amount of energy needs to be spent  elsewhere.

I've done the best I could to keep people in the loop and if that didn't work for some folks, I apologize. Blog posting were made within 24 hours of me getting the information.  And if anyone takes exception with the kind of information I'm sharing, sorry but that's not going to change.  Let me explain why. Whether mom eats breakfast, but not lunch, whether mom vomits once a day, three times a day, or not at all, whether she went for a walk or stayed in bed, all are truly irrelevant in the grand scheme of themes; she is going to die and nothing is going to change that!   The grand scheme of things is perhaps a better description than what I originally called the end game.  But it doesn't matter if you call it passing, dying, transitioning, or whatever other euphemism you want to apply to it, whether I or anyone else likes it or not, mom is facing the end.  With that overwhelming fact staring me in the face every day, I hope you will forgive me if I don't focus on the little things, and make the most of the time I have with my mother while trying to meet the needs of other concerned folks as well.

Again, all I can say is that I am doing what I think is reasonable and fair to all involved, and will continue to do so.  There has been no malice, ill will or any other spiteful intent that should be read into anything that’s been done or not done so please,  share this information with anyone you think harbours those suspicions or feels ill used.

The last thing any of us need at this time is extra drama because of miscommunication.

So again, mom is back at KDH, feeling stronger and says she is up to having brief visits.

Transfer


Mom has returned to KDH and is in good spirits.  She says she is up to having short visits.

Nothing New

So just to make sure that we're all on the same page, the kind of information I’ll be sharing with folks will have to do with any significant changes in mom’s situation such as changing locations etc.  I won't be going into the minutia of mom’s daily routines either here or in conversation because, quite simply, while Michele and I will be working to ensure that mom is as comfortable as possible wherever she ends up, there will be little to comment upon that’s of any relevance since there is no foreseeable change to the endgame.

At this point, mom’s expressed wishes are to not come home, despite Michele’s and my desire that she be here.  She feels unable to care for herself, but until we are able to determine what level of home support we can receive, I am not going to rule that option out. 

Mom appreciates and values the expressions of care and support that she has received from family and friends.  She continues to tell me that visits that involve folks engaging her in conversation are taxing, and that even phone calls demand so much focus that they drain her of energy(she doesn't currently have a phone in her room either).  So, please balance your need and desire to see and talk to mom, with her need for support and low energy level.

Thanks all, for your understanding and support.

PS

I won't be adding anymore updates until mom is transferred back to Kemptville Hospital - KDH (she is on the waiting list for a bed), or there is some other significant change; presume then, that her condition remains stable and that she is as comfortable as possible.

New Diagnosis of Cancer

So, for the third time mom has been diagnosed with having a primary cancer (a type that is different from any of the previous versions that a person has had), and yes, having three different types of cancers is unusual.  She has fourth stage squamous cell carcinoma; a type of cancer that is unusual (doesn’t mom feel special).

As with all types of cancer the treatment options are radiation, chemo, or surgery.  Previous radiation treatments mean that mom has had all the radiation she can have; the effectiveness of chemo on this type of cancer is limited, and the cancer has spread too much for surgery to be an option. 

The next step is that mom will be transferred back to KDH to continue her recovery from surgery; once there, we will determine if we can get the support needed for her to spend the next few months at home (hard to predict, but the doctor indicated 3-4) or if she will need palliative care.

Mom has said that she felt like her body was falling apart, so she expected the news to some degree but it was still a blow to her.  We spent the evening working on crossword puzzles and listening to the “farting sound” her new pouch makes.  Beware; she intends to gross out anyone who visits by flashing them with the sight of her new pouch.  We figure she may as well get what fun she can out of the situation.

I will keep the blog updated once we have more information.

PS   Mom appreciates the chocolate (actually, I do) but mom’s appetite has changed to the extent that she no longer eats it so please refrain from bringing any more.  (And my waist certainly doesn’t need anymore).

Surgery Success!

Mom arrived back in her room today at 1:30 p.m. 

She was groggy, dropping in and out of consciousness.  Spoke with one of the doctors who performed the operation who reported that it went well and there were no complications. 

A biopsy of the fistula was performed as, unbeknownst to us (don't get me started on the total failure of the doctors and nurses to communicate), they discovered something in the colonoscopy last week that lead them to believe that the fistula might be a cancerous growth.  Next step is to wait and see the results of the biopsy.  

Surgery Alert

Last night, Monday, April 15, mom told us that she was scheduled for surgery in the next 48 hours.  Checking with the nurses, we found out that this indeed was true.  Surgery was scheduled for this morning but could be cancelled depending on emergency cases; we were to check with the nurses’ station after 

9:00 a.m. (8-9 is their busy time checking on patients) and the nurses also said they would contact us if they found out mom was going in to surgery (although they said it could be only 15 minutes notice).

At 9:10 a.m. I phoned the nurses’ station to find out that mom was taken to surgery at 7:30 this morning.

So, mom is in surgery as I write; she will not be out for at least another 3 hours and family is not permitted in recovery during the day.  I will update as information becomes available.

Mom is in the General Hospital in Ottawa; room 7106 (bed 1)

The Back Story:

At the end of February, mom asked to go to the hospital - upon the recommendation of our family Dr., we went to Winchester in case she needed a CT scan.  She did, and it was determined that she has a rectal/vaginal fistula and would need surgery to remedy the condition.  Our family physician made a referral to a surgeon in Ottawa.  The surgeon to whom mom was referred at the Civic (Dr. Oboo) declined to take the case without having even seen mom. (After about 2 1/2 weeks from the date of the initial referral, and prior to mom going into KDH, I phoned his office to alert him to the worsening of mom's condition - the receptionist's response was that they have a long waiting list.  It was within a few days of this call that the Dr. declined her case.)

On Wednesday, March 27, mom again asked to be taken to the hospital as she felt that she was no longer able to take care of herself even with the support of Donna, the person who has been assisting mom for the past 10 years, and an additional person we hired to come in twice a day to assist. (We had been on the waiting list to hear from CCAC to get further support from them - when I called them at the same time that I had called the Ottawa surgeon, they at least acknowledge that mom’s condition had worsened and would schedule the next available appointment which was in 1 week to do an intake assessment. Unfortunately, mom's condition degraded to the point that she needed to be admitted to the hospital before that happened.

When seen in emergency at KDH on March 27, the doctor was astounded that mom had not seen a surgeon since the initial assessment had been done in Winchester three + weeks earlier.  Mom was admitted to KDH even though there were no beds available and spent the night in an emergency hall.  There was great difficulty in getting a surgeon to even consider taking mom's case.  The surgeon that works between Winchester and Kemptville, after seeing the CT scan from the initial hospital visit in Winchester, indicated that surgery was more complex than he was able to deal with.  The complexities include:

• Damage to mom's the abdominal area from  previous surgery
• Damage to the abdominal area from radiation treatment 
• A number of unrepaired hernias
• Diabetes
• Recently discovered heart fluctuations that make being anesthetized a high risk

As a result of all this, the attending physician in KDH (Dr. McCallum) made several attempts to get a surgeon, but only to be rebuffed by some rather arrogant surgeons.  She eventually took mom's case to the KDH Chief of Staff.  He took action and dealt directly with the Chief of Staff for the Ottawa hospitals.  (I don't know if my asking whether a doctor could be directed by a court to take action had anything to do with it or not).

On Wednesday, April 10 when she was sent in from KDH to the General for a consult with a colorectal surgeon, mom was admitted and has been there since.  Based on his study of the CT scan that was that day at the General, he noted that her colon has an irregular shape and wanted further diagnostics before deciding on whether surgery to rectify mom's fistula could be conducted.  According to the CR surgeon, diverticulitis may be a factor that has exacerbated mom's condition.

Today, Friday, April 12, mom finally got a colonoscopy and we are now waiting for the results.

Mom appreciates all the prayers, well wishes, and gifts; she knows that folks want to visit and offer their support but her energy level is very low and both phone conversations and visits are thoroughly y draining for her.  To be blunt, visits are really a waste of time as the duration needs to be kept to 5 or 10 minutes maximum.  Cards are welcome:

Patient: Carmel Jean Brooks

RM 7106, Bed 1

Ottawa Hospital, General Campus

501 Smyth Rd, 

Ottawa, ON, K1H 8L6

I plan to update this blog as information becomes available and I hope to get mom adding things herself.

Thank you all for your support.