Another family meeting...

Mom went to the hospital and the doctors want another family meeting.

It seems that the aneurism fix and the brain biopsy are too risky for the hospitals to consider.
But they still want to do the T.E.E. test.
So what's the point of the T.E.E. test if there is not going to be any fix for it?

They will schedule it for Thursday December 1, 2005.

Brother was at the family meeting. I wasn't able to attend. I was already at work and hip deep into it with commitments so I can't leave. Mom asked brother to summarize the meeting and send it to her by email so she can send it to me.

I won't hold my breath for the summary.

Manna from heaven...

I guess after not eating any kind of nourishment for over a week, the liquid sustenance that the hospital is now giving Dad through the PEG is like manna from heaven. He's been "eating" for over 24 hours now. Dad still looks like he's trying to get over the sedatives given him on Thursday for the tests. Mom's happy that he's getting some "food".

I took Mom to get a cell phone. It's a basic pay as you go plan. It's for emergencies for when she might be travelling late at night. I programmed a bunch of numbers in it for her. Now if she only can figure out how to answer and place calls.

:)

The PEG...

It was inserted yesterday. They will be giving him liquid food today. I don't expect any issues from having it put in.

Meeting with the doctors...

They need some direction. We've got some choices to make. It depends on what we'd like for Dad.

The MRI was successfull yesterday. It provided the much needed clarity into his state. Dad definitely had multiple strokes. Over a period of days most likely. But what was the cause. The doctors still need to find this.

There are 2 basic thoughts on this:
1. The trans thoracic echo test from yesterday showed a possible aneurysm. This may be the source of the blood clot causing the stroke.
2. Vasculitis of the brain. This is infalmmation of the blood vessels causing restriction of blood to the brain.

A third suggestion was demylenization. However, Dad was given steriods early on and this would have cleared this up.

So what we have is to run a T.E.E test. This will show whether the Dad has an aneurysm or not. If it is detected, the doctors want to close it in case more clots may develop and product another stroke.

The hospital will conduct further MRI's after the aneurysm surgery and see if he still is exhibiting effects. If not, then that likely was the cause of the clots.

The higher risk if the effects are still showing is to have a brain biopsy done. They would drill a hole in the skull and remove a sample of brain tissue. This is the only was to determine if he has vasculitis of the brain.

This is where we are right now. One day at a time. Mom's holding up. Barely. I call her during the day at the hospital and in the evening after she gets home.

Daughter added on thing to her Christmas wish list: Grandpa to come home.
I wish it could be possible, but I don't think it's going to happen.

Brother wasn't able to be present at the meeting. I'm sure Mom will get an earfull for letting the meeting go on without him. Bless his heart. He means well. He did say last night that she's not thinking of Dad and that she needs to consider Dad's health. Thanks, but what do you think she's been doing all along? I don't think she's enjoying the situation for the extra attention it gives her. I try my best to counter the negative comments that brother gives her. She knows what's best for Dad. That's all we're all thinking of... what's best for Dad.

Mom will give her consent on Monday for the T.E.E. test after informing Brother of the information given us today. I told her to hold off until Brother was informed. I'm sure he'd go ballistic if she signed off on the prcedure without telling him.

Meeting?

Mom left a message on my cell phone voicemail. Seems brother was all rude to her so she said to let him deal with this one and not to bother going to the hospital. I drove in today specifically to go to the hospital. The meeting was about going over the results of the tests. I'd like to be there for the diagnosis.

Screw it, I'm going anyway.

Numerous tests today...

Dad had a battery of tests and procedures, relatively speaking when compared to the last 5 weeks.
1. Trans thoracic echogram
2. MRI
3. PEG

They were going to do a TEE but decided to do the trans thoracic instead. Good that they got the PEG done. Dad can get food again. IT's been over a week on only saline and sugar. Well done was the MRI - finally.

The hospital called and wanted to discuss the results. They left a message on Mom's answering machine requesting to meet tomorrow morning. They also wanted to talk about the brain biopsy as the last test. Once all tests are completed then Dad goes back to the first hospital. They definately believe he had multiple strokes due to the numerous infarcts seen on the CAT scan.

Brother got all in a huff about the meeting as he wouldn't be able to make it. Mom said told him to call the hospital as he wanted them to have the meeting next Tuesday. I thinh they want the bed back for other patients once Dad is done there.

Challenges of MRI

The hospital tried to get an MRI today. It wasn't successful. Dad is moving too much. The nurses and doctors call it "restless". They sedate him because his movements can and did get him out of bed and fallen on the floor twice now. They gave him something a few hours before the test, but it never works out for Dad that way. He resists the sleepiness. He fights it. Hours after it's suppose to knock him out does he finally succumb. He's so stubborn. That's where I get it from.

I'll get Mom a cell phone this weekend. She needs it for winter time. And for us to call her to make sure she's okay.

Intensive Care in our health care system...

This article relates to the state of health care in Ontario (www.thestar.com: The right patient in the right bed). Dad's getting bed sores. It happenned in week 3. How much of his moving about is related to this issue? He moves to alleviate the pain, but by moving causes more openings in the bed sores.

I fell dead asleep last night. If there was an earthquake I wouldn't have felt it. It must be fun to be around me.

As theories go...

Dad has an irregular heartbeat. This caused at some point a clot that
caused a bilateral infarc of the thalmus. Is this new to us? No. This
was suspected early on. However, there is no proof whether this is
actually the case. Would this have made a difference 4 weeks ago when
Dad went into the first hospital? I can't answer that question. After
4 weeks of waiting, have we missed the opportunity for full
rehabilitation. Or does it matter with this kind of stroke? The
general impression I get is that it would have made no difference. The
neurologist at the last hospital said this would be the worst case for
recovery. He didn't hold out much hope. In fact he mentioned that
there was only one other case similar to this and after a year the
patient entered the hospital system, the patient died.

Recap: The hospital wants to put in a PEG for feeding as Dad keeps
pulling out the NG tube. When the neuro team came in to look at Dad
the doctor took a kleenex and put it up and around Dad's nose. He
tried to swat the kleenex away. It bothered him alot. This would
explain why he keeps pulling out the NG tube. It bothers him. It would
bother me too. But because he keeps pulling it out he isn't getting
any food. They'll insert it one more time. Mom's concerned about
putting in the PEG because it's surgery. After researching the PEG
insertion process, it doesn't seem to be a problem. However, Dad took
such a long time to come out of the heavy sedation when he went for
the CAT scan. Brother doesn't want Dad to have any surgery. Mom
doesn't know what to do. I'll support her no matter what.

Dad's had a sitter for the past few days to watch him. This gives Mom
a much needed break. Daughter and I joined her for Church and
then went to the hospital to see Dad. We stayed for an hour then left.
I helped Mom do some Fall work for the house as she doesn't know what
to do with some things. So today I spent half with Mom and the other
with my own family. Not satisfying for either side.

I don't expect Dad to be home for Christmas. I told Mom she will come
to our house for Christmas. She started tearing up. She can only think
about one day at a time.

PEG...

Since Dad keeps pulling the feeding tube out of his nose (I'd likely do the same given I don't think I'd like something permanently up there). The hospital wants to put in a PEG surgically. It would solve the issue of him pulling it out (counting 6 times now) and provide a convenient method to be able to nourish him. We're a little concerned about the surgery and anesthesia. Dad took a long time to come out of the last heavy sedatives given him for the CAT scan test.

Dad got transferred today...

I wasn't expecting it to happen so soon. I was expecting the long wait for a bed. Mom called at 3:00pm and told me the ambulance had arrived. No warning. Mom had taken down some of the personal items like cards the grandkids made yesterday already. I wasn't able to help out as I had daughter tonight and Michael wasn't home. I don't know how she'll get home. Another taxi. I'm concerned about the financials of the household. Mom's going through lots of money due to the additional expenses.

I worry about both of them.

Moving Dad to another Hospital...

We did receive word that Dad will get transferred to another hospital. Sunnybrook has a neurology department. Main Doctor would like to transfer him there because they have better facilities to be able to diagnose the issue. The hospital has run out of tests. They have no diagnosis. My Dad lies in bed for 3 1/2 weeks and is the hospital trying to wash their hands of the problem by shipping him off somewhere else?

Problem is that Dad will have to wait for an available bed. How long will that take? If it's lengthy, what happens to him until then? Will they ship him out of acute care?

Doctor's visit...

I dropped in on Dad before going to work this morning. His sitter was there in the room watching him. No bruising that I could see, however that usually shows up a few days later. While I was there, and this is at 7:00am, the reumatoid specialist comes in. Mom's met him before but I haven't. He asks if I'm his son to which I reply yes. He then asks if Dad's any better than last week. I reply "no, he's basically the same from when he arrived". The doctor says he'd like to speak with the neurologist and perhaps give Dad some medication. I reply to the doctor that if he wants to give Dad some medication then it indicates that they must have some idea of what's the cause. The doctor didn't want to say without consulting the neurologist. He did mention that he wanted to up the dosage of Prednisone. This usually has grave side effects:

"Patients with true GACNS, proven by biopsy, invariably require aggressive therapy with drugs such as high doses of glucocorticoids (a cortisone-like drug such as Prednisone) and a second drug known as cyclophosphamide. These drugs are generally administered for six to twelve months and require meticulous follow-up to assess benefit and avoid side effects.

Possible side effects of high doses of glucocorticoids include abnormalities of blood sugar, blood pressure, weight gain, thinning of the bones, and increased risk of infections.

Cyclosphosphamide also has formidable toxicities including lowering of the white blood cells making individuals more prone to infections, bleeding from the bladder and even bladder cancer. Patients who take cyclophosphamide for more prolonged periods of time have a higher incidence of certain forms of cancer later in life."

This is not to be taken lightly. Dad will either start recovery due to these high dosages or die due to the high dosages.

When the doctor comes to see the patient at 7:00am in the morning, does the doctor really expect a family member to be there?

How do you balance work, family and health crisis...

I've never done this before. I don't have the manual. What's the
procedure. Men like steps - Do 1, then 2, then 2a if necessary. Due to
my daughter, I need to pick her up after work and take her home. FYI,
I'm divorced and have shared joint custody of our only child. So on
days like this I can't go to the hospital. I take the train in to work
so I have no car. I want to go there. I want to help in some way. But
today my options are limited.

The bigger question for me is how do I make this all work some how together?

Dad fell out of bed

The hospital called Mom tonight. Dad had some how gotten under the bed of his hospital room mate. This means that he fell out of bed and rolled or crawled 3 feet. One of the neurologists came to make sure he didn't suffer any injuries (but he didn't check if he broke anything). Dad can't eat on his own or move at will. He does pull him self from side to side of his bed and can move his legs. The ward manager and Dad's primary doctor were paged (Doctor never answered - 4 pages too). Mom went to the hospital, mostly for peace of mind, to make sure Dad was okay. My aunt and uncle were there as well (co-incidentally). After they made sure he was okay Mom went home. My aunt and uncle (Dad's side) left before Mom and didn't even offer to take Mom home. Mom doesn't drive. She took a cab to the hospital and back. Thanks aunt and uncle you're so considerate.

Hospital care and nurses...

Last night the hospital called and asked if my Mom or a family member would come and watch my father. They had a sitter for a few nights (11:00pm - 8:00am) to watch him in case he pulled his feeding tube out. Problem was that the nights the sitter showed up he didn't even have the feeding tube in.

Who's responsibility is it for patient care. Having someone, like a family member, watch him all night will ensure that the nurses don't have to put in the feeding tube again if he pulls it out. I know - it's getting to be a hassle for them as he's pulled it out the last 7 times they've inserted it. The nurses are getting frustrated. So is my Mom. She's been there every day since the beginning. The doctors are getting frustrated because they have no answers for my Mom.

Mom doesn't want to complain about the nurses for fear they will end up taking it out on my Dad. Piss on that. If the nurses aren't doing their job then the manager should now about it. Why are they asking family to come in when it should be there job. Why are they sedating him so regularly just because he keeps pulling his tubes out. He's not even aware he's doing it.

Sunday morning...

I slept in until 8:30am. I haven't done this for weeks. I'm exhausted.
I thought lastnight I would take Mom to church (or rather meet her at
church since her sister will actually take her).

I didn't wake up. Hope she doesn't think badly of me. I need a day
off. My back is hurting today.

Parents in need...

Someone mentioned to me that I'm now one of the generation that looks after the parents as well as looking after my own family. I don't think I'm there yet but it gives me food for thought. How will I handle the needs of my parents in a dependence situation and balance the needs of my own family? It's the sandwich effect.

Mom was leaving the hospital just as I was going. The main Doctor showed up and spoke with Mom. They don't have a clue what is the issue. The doctor wants to push to get him to another hospital. It's become clear that this present hospital can do no more for him.

I need to stay at home tomorrow. I can't keep up driving back and forth like this. It's excrutiating. My back is starting to suffer for it. I feel guilty though for not visiting.

Realistic or negative thoughts...

I spent much of the evening in Michaels arms. Crying and at times sobbing. Michael is my partner. My life partner. He has been with me through this. Even though he hasn't been to the hospital he knows the pain that it has brought our family. Not just my family, but our family. Daughter hangs on to a big teddy bear that Dad gave her years ago.

For the first time I permitted myself to think what was not permitted. That Dad will die before they forgure out what's going on. I'd like to think he's fighting to live, but if I was in his position would I want to continue living? As time goes on I start to think about quality of life. I think about how Dad would like to live. I think about Mom and her life.

He might not come home...

For the first time I had to admit to myself that my Dad might not come home. I don't mean just for Christmas, but forever. I never wanted to entertain those possibilities, but now I have to. I took the day off work and spent it with Mom at the hospital. From the physiotherapist and the hospital Chaplin: he's had every possible test, seen Doctor's from other hospitals, one of the rare and unusual cases in the past year. He's more in a fetal position now. Not stretched out like days before. What can I do? Pray that the Doctor's will find the cause? Pray for a miracle. Pray.

3 weeks in the hospital. 3 weeks in acute care. We'll never be the same again.

-

Fever and bladder infection...

Dad was removed from the feeding tube. He's got a bladder infection which they're treating with antibiotics. He was coughing a wet cough. This is when he could get in real trouble for complications - like the flu.

Diagnosis...

Well, no final answer. It's still a mystery. The Doctor told Mom it could be serveral things:
1. Vasculitis in the brain
2. Demylenization
3. A series of mini strokes (TIA)

Thanks for narrowing it down for us.

Dad comes out of sedation...

Mom stays with Dad most of the days and goes home at night. She was very concerned about his sleeping. He's been sleeping for days. Not opening his eyes. I wasn't going to go today. I need a rest. The driving is difficult. I drive 1 hour in to Toronto and then 1 hour back. Typically I leave the house at 6:00am, go to the hospital before work. After working all day I leave at 4:00pm and go to the hospital. I take Mom home and have dinner with her. I leave for home at 7:30pm and arrive by 8:30pm. It makes for a long day. I needed Saturday to regroup.

Mom calls and says I need to get to the hospital. She left a voicemail.

I call her at the hospital. Dad is starting to come out of the sedation. He's pulled out his IV. She's freaking out. She tells me that if I'm not at the hospital I'm no use to her. It hurts. I try and be there for her as much as I can but I'm getting exhausted too. I tell her I'm leaving and I'll be there within an hour. She calls back 15 minutes later and says not to bother coming. The nurses have put everything back in. I'm upset at the whole thing. I want to help Mom so she can help Dad. She panics and everything is wrong. No one can help. I go back home. Daughter and I will take Mom to Church tomorrow morning.

Heavy sedation...

The doctors need a CAT scan done. If would be better to get an MRI, but since Dad moves too much the MRI is not possible.

It would be three days before Dad comes out of the sedation.

The silence is deafening...

They've got restraints on him and these hand coverings that look like boxing gloves so he doesn't pull out the feeding tube. He's had several cans of it. He keeps trying to turn himself over. It look like he's trying to keep himself physically stronger by pulling himself over. That could just be me interpreting.

Feeding tube...

Dad was put on a feeding tube. He has only been getting saline since he was admitted. He's lost weight. He can't even take ice chips. They're afraid he'll asphixiate if they try and give him solid/pureed food.

He's hooked up and is getting Glucerna, a liquid food for diabetics.

Dad's already pulled out the feeding tube twice. His glucose level varies quit a bit now since he is on the Glucerna. The nurses manage it with more insulin.

Family meeting with the hospital...

We had a family meeting with the hospital. Mom let me know it wasn't just about Dad's health. Brother has taken it upon himself to be rude, aggressive, insulting and problematic for the nursing staff. I guess he, like the rest of us, is getting frustrated with the lack of information and the frequent use of sedatives. The hospital wanted everyone to know that information legally can only be disseminated to the power of attorney - Mom. Brother is not very happy at the meeting as much of the conversation was being addressed to his behavior.

He claims that Mom is unable to provide or pass on the information that the various doctors are telling her. He says she doesn't know or can't remember when he questions her. She asks him if he ever calls her to ask. He says yes, every day. Mom disagrees with that statement. Brother never calls Mom. Not even to find out how she is doing and if she needs food. Or comfort. Or a hug.

A new doctor took over the case from the admitting doctor. She let us know what she is doing. We leave comforted in knowing the doctor has a plan and the hosptial wants to help him recover. Brother disappears after the meeting not saying goodbye to anyone.