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.