Hospital number three in 7 weeks...

Dad must have a thing with Fridays as it was 7 Fridays ago that he first went into the HSC. Here we are now at the third hospital. He isn't much better today - very quiet. He has some standard answers he can produce... usually no to a question involving food or drink, and "good" for asking how he is. He was mostly only repeating things we have said otherwise. He seems in ok spirits... not the best, but he wasn't upset or stressed or anything. His blood is low again (not sure why - there doesn't appear to be any bleeding that we can see), so he is having a blood transfusion now shortly. The nurse looked back through his bloodwork and it was be going down since around March 17th when it was 113... now it is 84! Normal would be somewhere around 130. He is staying in the same room as last night - no word on how long etc. Looks like he will be having another CT scan of his brain on Monday and an ultrasound of his carotid arteries on Monday as well. He has some bruise on his hip/bum! That seems to be the only thing that is causing him pain/discomfort right now. It isn't the best spot for visitors at the moment because it is for people just recovering from a stroke but I will let everyone know where/when they can start visiting again.

What a day...

So, today did not end up as expected. We thought we would be getting information on his admission to the Miller Centre, however, he has now been admitted to St. Clare's. It is a little too late to give all the details but to make a long story short, this is what happened...

Dad had a couple of falls last night - very unusual night. Then, at around 6am, he was up in the bathroom and had an "episode". What this was is still not determined. Whatever it was sounds identical to what was happening to him in Halifax when his BP dropped super low and he passed out. It could also have been a seizure, or what they are thinking now, a mini stroke (or TIA). Regardless of what this particular episode was, he had definitely had at least one mini stroke. This explains what has been happening lately (and more importantly, since the angiogram).

It seems that he has a fair amount of plaque built up in his carotid (sp?) arteries. It is possible that these TIA episodes were caused by the angiogram, which is done by inserting a scope through his groin, up through this carotid artery and into his brain to check out the aneurysm. While the scope is passing through, it could have dislodged some of this plaque which floats up to the brain, causing a stroke.

This affected his language big time today and his right side again. By tonight he seemed alright... he could speak as good as yesterday I would say.

Tonight he is in an acute care room for people who have had strokes. When we just left he was asleep and didn't mind us leaving his after a long day of 15 hours in emerg!!!

Fingers crossed that this will calm down now. He will prob be in there for a few days. It will be over my dead body that he is discharged home and not to the Miller Centre after this.

I heard back from the social worker after my last post and she said that the referral from the doctor was already in and that she will meet with the person in charge of admissions tomorrow morning. She also said that wait lists look shorter than usual. Good news but it is not an easy thing to be happy about! We should have some more information tomorrow.

Hello everyone,

Dad just had his appointment with Dr. Englebrect. I have a few things to relay!

First of all, the results from the angiogram were not fully available as the radiologist hasn't finished the report. Dr. Englebrect did go down and look at the scans before the meeting and he said that as it looks, there is still a trickle of blood going into the aneurysm, however, it is very small. We were hoping for full clotting and occlusion. Saying that, it still may happen. The scans are being sent to Dr. Fleetwood in Halifax. The two scenarios that may come from this are to wait another month or so and do another angiogram, or to do something else sooner rather than later. This could be putting in additional coils. When it comes to full blown surgery to remove the aneurysm, we have pretty well decided along with Dr. Englebrect that that is not the best idea. The risks are too high and would be very outweighed by any benefits.

Concerns about how he seems to be going downhill were raised. He isn't sure what could cause this, but he did explain again that the aneurysm is mostly in the left hemisphere which controls language skills and the right side of the body. Dad is having a lot of weakness in his right leg and weakness/tremors in his right hand and arm. He was not surprised that this is happening. His language issue lately is the most distressing of everything going on... in my opinion anyway. He has still been doing the thing were he repeats things over and over even if they don't make sense. He knows he is doing it and he can't stop it.

He said that with therapy, this could improve, but that we shouldn't get our hopes up that things will get better than they are now. He also said that because the size of the aneurysm doesn't seem to have changed, things shouldn't get worse. The fact that he has been worse the last few days could be from one of the falls or it could be ANYTHING. He really didn't know.

We also asked him about the possibility of Dad being admitted to the Miller Center. At this point, having Dad at Mary Lynn's isn't really ideal for him... I mean, Mary Lynn and Fred have been doing EVERYTHING they can possibly do and there is someone always with him, but it is just too challenging for everyone to handle. As hard as it is, everyone needs to take care of themselves too and I really think that being at the Miller Center and receiving constant support would help him get his strength back sooner. Dad doesn't seem to care about any of this... But I really think it would be good for him and would take a lot of stress, worry and pressure off everyone. I know that this is something Dad would agree with. I spoke with his social worker about it today after the doctors appointment and she agreed with this, as she assessed Dad last week. Dr. Englebrect also agreed and is going to refer him to be admitted. Depending on who else is on the waiting list etc., this could take weeks or months. In the meantime, we are going to be having a home care worker come in for a couple of hours a day to get him up and on the go a little more. This, along with the rehab program starting next week will be a lot of change, but is a good thing.

Information overload, I know.

Let hope the next week is better than the last.

Hello all,

Dad has his angiogram this morning. We have an appointment on Thursday morning with his neurosurgeon here to discuss the results. I am a little worried about how this meeting will go as things have not been very good. Dad really doesn't seem to be progressing. For a while I was ok with this as I just thought things will slowly get better. Lately, things have not only not been getting better, but some things seem to be getting worse. For example, he is very very quiet all the time. He will say a few things but generally does not participate in conversations and sometimes when he does say something it doesn't really make sense. I asked him yesterday if he is finding it hard to come up with words and he nodded. I do still think that he understands MOST of what he hears but when it comes to expressing himself, it is very difficult for him. Not only that, he doesn't seem like he wants to talk - not like in Halifax when he kept trying but couldn't get anything out. Even when I think back to what he was like back here in hospital he was much better. I really wish they never discharged him. Another example, I just called to see how this morning went (it was at 3:37 that i called). I asked him what time they got home and he said 4. Clearly not right. He said right away "No... that's a lie....got home around...... got home around..... got home around...." until I said don't worry - it doesn't matter. Then the rest of the conversation whatever I asked him, his answer was "got home around 4.... got home around 4...". Super weird. Saying that - it was a long day and I am sure he is very tired. He also got sick last night. He has thrown up a few times since being out of hospital but not many times. They never really determined what was causing him to be sick before - could have been after having a seizure but they don't know. I am worried that this step back could mean there is another bleed or that the aneurysm is still growing... Talking to the doctor Thursday will be good to see if they have any new insight. Will let you all know as soon as we are out of there.

Nicole

Dad was accepted into the rehab program at the Miller Centre. Because he has so many appointments this coming week, he will start it the week after. It will be good for him - it is exactly what he needs right now. It is still a little distressing that he was released home and not to the Miller Centre as a patient. He really needs constant care and it is so hard for family to have to supply it. He has had another bad fall - so twice since he has been out of hospital. It is frustrating to him and pretty scary for us!

Hello everyone!

Dad has had a busy couple of days with appointment at the Miller Centre. They are assessing him to see if he will be accepted into a rehab program they provide there. Mom, Mary Lynn and Fred have been taking him to the appointments. From what they tell me, all the doctors/nurses are telling Dad he needs to get up and moving more than he is now. Lying on the couch isn't going to do him any good. This is fine enough to say but man, it is not easy to get him on the go! Yesterday he did some walking back and forth the hallway and today he was out all day so that has been great. He also needs to be eating more. He has no appetite so that isn't easy either, but it is food and movement that are going to help him re-build his strength. Other than that, he has his angiogram coming up on Tuesday and his appointment with Dr. Englebrecht (neurosurgeon) next Friday. Hopefully by then we will have some more info on what/if anything will be done. Don't forget about the benefit concert on April 15th! Gonna be a time! I am really hoping that Dad will be able to make it at least for a little bit. He seems like he is starting to get a little depressed... can't blame him really. The confusion (the docs are calling it "delirium") has been a little worse this week. Apparently, when your body has been through what he has been through, any little thing can make delirium worse. Could be as simple as not drinking enough water one day, or the fact that he had a fall last weekend. Fingers crossed that this will pass and he will improve soon...

Well it has been 9 days since Dad got out of the hospital and I wish I could say he is doing fantastic, but he is still pretty much the same as a couple of weeks ago. Still very tired and feeling worn out all the time. His appetite is non-existent which isn't helping him regain his strength. He is staying with Mary Lynn for the time being. He hasn't had any appointments since being out of the hospital except a visit from a public health nurse. Starting this week he will be out of the house a lot more. Tomorrow morning he has a group rehab session at the Miller Center and he has the same group Thursday all day! It will be hard and exhausting for him I'm sure but it will be good to get some activity in and get moving. Next week he has a few doctors appointments with his family doc and his neurosurgeon as well as blood tests and another CT angio to check on the coils. They are hoping to see some more clotting going on. The last day or so he has been a little cloudy... not talking very much... and having some memory lapses. He hasn't been interested in leaving the house at all for a drive or just to sit out and get some fresh air. I hope that getting out a bit this week might at least lift his spirits or make him less bored. It would be nice for him to become more mobile in the next few weeks as April will be a big month!

Dad is out of hospital. As amazing as that is, I cannot BELIEVE how terrible his discharge has been handled. When we met with the doctor on Wednesday, we also spoke to the physio person on the floor and his nurse about when he would be getting out. They said that no discharge plan had been started so it would be a while. Because Dad is going to be going to his house, we knew we would need at least a day or get organized, plan where he was staying, get the equiptment he will need at home, his clothes, meds, etc. They told us we would be given lots of warning when he was getting close and that is definetly wouldn't be anytime soon. Yeah, they gave us about three hours! SERIOUSLY! What would have happened if he didn't have family that actually cared and were willing to take him in? Would he just have gotten a taxi back to his house? He can't drive, he can't cook, he is too tired to walk to the freaking bathroom but just send him home! No problem! CANT BELIEVE IT!!!!!! This whole situation has really shown me how utterly terrible our health care system is.

Anyway... It is great that he is out now. As far as I know he is staying with Mary Lynn for the time being and eventually moving into a small apartment in Mom's house. That way he will have his own space but is around people all the time.

Good thing this all happened on a Friday afternoon so we can get sorted out this weekend.

Dr. Englebrecht just met with Dad and I. During the angiogram yesterday they saw that there is still blood entering the aneurysm, although it is still a very small amount. They spoke with Dr Fleetwood in Halifax and he said that he expects the aneurysm will still occlude over time. They are going to do another angiogram in about two weeks. We spoke to him about options for the next step. He made it very clear that the risks involved with removing the aneurysm are exceptionally high. Although he never said it, I was given the impression that it isn't a good idea if it can be avoided. Right now the aneurysm itself is acting like a tumour but because it has grown so slowly, his brain has adjusted to having the aneurysm in there. If in two weeks there is still blood flowing into he aneurysm they may add some extra coils or another stent. This would mean another trip to Halifax. I asked if he was to get the crani and remove the aneurysm could it be done here and he said that was a possibility but he was not sure. When it comes to Dads energy level, they aren't suprised that he still feels terrible. It takes a long time to get over the type of trauma that his body went through during his week in ICU. He should be getting out of hospital soon but there are no plans of discharge right now. He seems to understand what is going on but he isn't so positive about needing some supports when he leaves hospital. We shall see what happens! We need to just remember how lucky we are that we have him to worry about.

:)

Wow... what incredible friends Dad has. There is a benefit planned in Dad's name by a number of his friends. The info is below:

Sunday, April 15th, 2012

Club one

Live performances by:

Billy and The Bruisers
Masterless Men
Sons of Erin
One Night Stand
Jeff Dyer Band
Bob McDonald Band

with more to follow...

-Donation at the door
-Live and silent auction

FOR MORE INFO CONTACT: Joe Tompkins

Thank you from the bottom of my heart to everyone involved with this event! Something to look forward to!

As of right now Dad is still at the Health Sciences. He is still feeling very weak and very tired. He had his angiogram this morning so hopefully soon we will have some report on how the coiling and the stent are working. Fingers crossed for a good report... the way things are right now, I can't imagine Dad being strong enough for surgery any time soon. Any test on his head he has undergone so far he has gotten through without any complications. It is amazing how aware Dad is right now and really it is a miracle that he is still with us. So, lets hope the miracles keep coming and the coiling/stent will be enough to keep Dad healthy for years to come!

Still not much to report... Dad is more or less the same as last week. Still very tired and weak but has been gaining strength a little at a time everyday. Can't believe that this has only been going on for 3 weeks. It feels like a year. Hoping that we will have the angiogram scheduled for some time this week. At least then we may have some idea of what is to come.

Hello everyone... not much news to report today... We haven't received much info about the various tests he has had today and yesterday. Hoping to cross paths with a doctor tomorrow at some point. The nurse isn't worried and told us no news is good news. Sounds good to me, although tere are signs all around the hospital saying "no news is NOT good news". I'll take her word for I. He is in good spirits but he is still very tired and feeling weak. It will be nice to spend some time here during the day this weekend. Again, drop me an email and I will let you know where you can reach Dad or his room number. Happy Friday!