Update

Hello and Happy Canada day weekend! Just an update on the last month or so. Dad is doing super well. Since I last wrote he has played three times and seems to be doing fine there!!! He also completed a driving test and passed so he is waiting for a medical from his doctor and then he will be driving again :) he is really looking forward to this. By the middle of this week he will be into his new apartment. I think he is looking forward to having his own space now - he is ready for that. We visited his doctor again and Dad has (for now anyway) decided not to go any further with treatment because it is just too risky. We all support his decision, as does his doctor. He is just doing so well that it isn't worth the risk. He could be fine for a long time, which is great! There was a thank you note in the paper last week for everyone participated in the benefit concert and especially for all of the support! Nicole

Hello!

It has been a long time since my last post as things have been pretty insane.
Most importantly, Dad is doing REALLY well and he is out of the Miller Centre now and is back at Mary Lynn's most of the time. He is staying with us occasionally too. He definitely felt a little apprehensive about leaving the Miller Centre, but I think he will be fine. He has regained most of his strength and is pretty well back to normal mentally :). It is too bad that he isn't receiving the same therapy now that he is out, but he is looking into a couple of options for groups. If anyone has any suggestions, that would be great!
Medically he is stable. He hasn't had another angiogram CT in the last month because they are invasive and his last one may have caused the mini stroke. His doctor in Halifax has talked about putting in more coils, however, there is some issue with a possible strike with Capital Health, so they aren't in a position to take him right now. This is good because he has more time to think about it and make his decision. Whenever they are ready for him, he will have another angioCT to assess things and then he can decide. His doctor here isn't pushing any further medical treatment as he can live with the aneurysm as long as it doesn't rupture (very unlikely). He will probably suffer another bleed at some point, but maybe not. For now, things are good, and that's what we need to keep in our minds! If you would like to contact Dad, he is using his cell phone. You can e-mail me for the number. You can also call either me or Mary Lynn, and our numbers are both in the book!

Nicole

Hello!

Dad has had an excellent week. This weekend was my wedding and Dad was able to come to pretty well everything and more importantly, enjoy himself! He came to the rehearsal at Mom's house on Friday night but didn't come out for supper so he would have lots of energy Saturday. He got to the wedding at around 5:30 and didn't leave until after 10! He said he was exhausted at the end but he had a really good time. :). He also looked fantastic!!!! Because we have been getting such good weather on and off, he has been outside at the Miller Centre a lot and has gotten a bit of sun. Does a lot of good! Sunday he came to my new in-laws house for a brunch and ate more than I have seen him eat in MONTHS. Probably since before Christmas! It was so good to see him feeling so well.

Monday he had his appointment with Dr. Englebrecht. Mom took him to it and they were mostly talking about what Dad's options are now. From what he said, there is no "right thing to do". Some people will choose to have whatever possible done because they can't live thinking about having the aneurysm there all the time. Saying that, he said that he also feels that doing nothing, is a good option because all of the procedures are so risky. Dr. Fleetwood (halifax) seems interested in putting in some more coils since the blood hasn't stopped going into the aneurysm yet. That experience was so horrible last time that pretty much none of us want to go through it again - especially Dad. Of course, we will support any decision Dad makes.

Also, looks like there is a possibility of a strike in Capitol Health which would affect the hospital in Halifax anyway so they aren't in a position to take him on right now anyway. This means that we have more time to think about things. Dad is so good right now that the thought of him having complications like before and going back to that is horrifying, but, really, he could have another bleed at any time so that is pretty much equally as scary. At least there is nothing that can be decided yet.

They are holding off on another angiogram until Halifax is in a better position, then they will do one and we can decide then.

Today he had an EEG, which tests for seizure activity.

He is still at the Miller Centre for now, but we aren't sure how long he will be there as an in-patient. He has made such fantastic progress that it may be a shorter stay than we thought. Now we need to figure out where he will go from there! He loves it at the MC and wants to stay there as long as possible.

Best time for visitors is in the evening after all this therapies are over.


Nicole

Hi everyone,

Dad is still doing great! He is really benefiting from the therapy at the Miller Centre and he is beat out at the end of the day. It has been great for him to be able to spend some time outside during the good weather we have been having. As most of you know, he also made an appearance at the Goodwill Concert on Sunday evening. It was so great for him to see some friends and have a good time. I am SO glad he was able to make it there. It really was an amazing time. The amount of work put into organizing it and pulling it off was unreal, especially from Joe Thompkins (and Tracy too!) and Billy Sharpe, among MANY others!!!!! Keep your eye out for a note in the paper from Dad to thank everyone. I know that this Goodwill concert along with all the visits, calls, cards, and prayers had an important role in getting Dad to where he is today. He hasn't lost hope and he is good spirits thanks to all of you :)
I think he is also looking forward to this weekend as he will be able to attend my wedding on Saturday night! His doctor has given him the go ahead to leave whenever he has anything on the go.
Monday he has another appointment with Dr. Englebrect and we have about a million questions to ask him about what might happen next. I know his answer already will be "we don't know", but we have to keep asking. It is hard for the to say because they don't see aneurysms like Dads.... ever. He is supposed to have another angio soon too but it hasn't been scheduled yet. I am a little nervous about that as the last one may have caused his stroke. At least right now there is a lot of positives to keep in mind!!!
Again, thank you to everyone who came out and celebrated on Sunday night!

Cheers,
Nicole

Hey everyone,

Yet another good day!!! Dad has moved to the Miller Centre!! He is on floor 2North which is the Rehabilitation Unit. E-mail me if you want the room number or they'll tell you at the nursing station. From the sounds of it Dad will be having about an hour a day of physio, occupational and recreational therapy! Really looking forward to seeing how good this will be for him! This is a GOOD thing!!!! :) they also said it shouldn't be a problem for him to make it to the wedding in 10 days but they aren't sure about the benefit concert. We shall see!!! Fingers crossed!!!

Good news!

Hello all,

Sorry to have been neglecting this blog lately. Things have been very very busy.

Dad is doing super well the last couple of days. Has been up on the go out of bed - walking much more steadily!!! I am so happy to report this.

His speech has also nearly completely recovered. He still has trouble finding words sometimes but he doesn't get so frustrated because it isn't happening as often, and he can usually find a way around it. Speech and Language was in to see him yesterday and the only area where he 'struggled' a tiny bit was expressive oral language. The asked him to name as many animals as he could in a minute and he only got about 6 (if you could "one-eyed sheep" and "two eyed sheep" as different animals). He said he was done after that. They have the ball rolling on his admission to the Miller Centre and we are hoping he will be moving over there ASAP!!! Could be as early as Friday, but I am thinking it will be Monday. It would be nice for him to be over there because it would be more likely that he will make it to the benefit for a bit at least. I am praying that he stays this good for a couple of weeks as my wedding is quickly approaching!!! And he will be there regardless. Even if we have to have it in his hospital room he is going to be there.

I am very happy to be able to report some good news. It is not easy when there is little positive to say.

Don't forget!!! Benefit concert is THIS SUNDAY! 2-10 at Club One! Auction will be from 6:45-7:15! Would love to see all of you there.

Nicole

Hi everyone...

Again, not much to report. He is still at St. Clare's. If anyone would like to know the room # send me an e-mail - nbarela@gmail.com

Not sure how long he will be in there for, and not really any farther ahead than before with figuring out about the Miller Centre thing. We have spoken to the social workers at both St. Clare's and the Miller Centre and they both know about whats going on. Mentally he is about the same as the last few days. Short term memory is very short, he is pretty confused, and still having issues verbalizing (finding the words is hard).

He is also being super difficult when it comes to eating. We have had to really encourage him to eat and it has been a fight every night. Brutal!!

I only dropped in to see Dad for a few minutes on the way home today, but I managed to get a bit of an update while I was there. Dr. Bhalla (sp?) saw him today and said that he is very malnourished and probably wasn't eating very well even before all of this. That isn't too surprising to me. We have all talked about how since probably just before Christmas Dad didn't seem to have much of an appetite and probably wasn't eating very much at home. This, combined with not being fed for an entire week from the Friday he got sick to the Friday he went into ICU has made for a very malnourished body. It has been a struggle to get him to eat much even since he has been stable. Needless to say, after this news, there was no sympathy at dinner time today and he was pretty close to force fed his supper. They also have started him on a diabetic diet as they are testing him for diabetes.

ALSO, he now has himself a case of gout, which is like inflammation in your big toe (mostly) that all the men on Dad's side of the family seem to get. It is VERY painful. He is started on meds for that now today.

He had his CT but they didn't have the report back. He did not have the ultrasound of his neck/carotid arteries yet today. He is also scheduled for the test that sees if there is seizure activity (echo? EEG? can't remember what it's called).

He also had a visit from a neurologist. Not sure who or what happened with that - this is the unfortunate part of having to be at work all day!!!

And finally, physio was in to see him but he didn't manage to do much I guess where the gout was flared up.

He was still pretty quiet but Rick said he was a little more chatty than yesterday but he is still having major difficulty communicating. Rick was with him for a few hours this afternoon and Mary Lynn was going to be there with him this evening. We are trying to switch it up so that we aren't all there at the same time and there all night every night. We have to realize that this could be like this for a VERY long time and we have to start getting into a routine. Or else none of us will be very much use! He was super cranky tonight too with the whole eating thing too so it will be good to switch it up.

Ok, will update again tomorrow.

I don't have much to post today but I wanted to let everyone know that he is about the same as yesterday. If anything he is a little bit better. I imagine after the blood transfusion he felt a bit better. HeHe has a bunch of tests tomorrow so I'm sure I will have some updates tomorrow evening. No word on what his blood was today - not sure they tested it as he didn't appear to have had any blood taken.

His ability to verbalize was still a serious issue but he did say a few more things today. Takin it one day at a time.

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!

Also, you should all now be able to comment - the setting was so that only members could comment but now anyone can!

Hello! For those of you who understand things about blood (which does not include myself), Dad's blood was 10 today... up from 7 yesterday. The other number they had said yesterday was 64, so I don't really know what those mean! But apparently now he is still considered "low" but not as bad as yesterday. He did lose a fair bit more blood today so they are going to decrease the amount of blood thinners. He had a visit from a urologist today (there's a hint as to where the blood is being lost from...). They will test his blood again tomorrow morning and give him some more blood tomorrow afternoon if necessary. Just another bump in the road that will keep him in the HSC for another few days! His cell phone is back in action and he is accepting calls. If you would like to know how to reach him or when/where to visit him drop me an e-mail at nbarela@gmail.com . He is REALLY enjoying seeing friends and family despite being exhausted. He tends to nap while I am there but then perk right up whenever someone else comes in! I will try to update every evening when I get home to keep our friends and family away up to date on how he is doing. :)

Dad had a busy day today! He had a CT of his head this morning, but we never heard anything about it after. He had a few visitors this afternoon. Early this evening he started a blood transfusion and is getting two bags of blood because his hemoglobin was 64... Apparently normal is like 140-160. No wonder he was so tired! He had another gang of visitors tonight and is loving all the attention. I'm sure once this new blood gets into him he will feel more energetic!

Hello everyone... Just a quick update on Dad now! He is pretty much the same as the last couple of days! Still having some chest pain when he breathes deep or when he coughs but the chest x-ray is clear so it seems like it may be muscular. Other than that there is nothing big to report. He had a bunch of visitors today and enjoyed that but he certainly was tuckered out! A warning to visitors: be prepared to hear all about the doctor from Halifax who is haunting his dreams. He is very serious and is preparing himself to deal with him when he goes back there! Haha. Hopefully he will continue to get better and better everyday!

Back at home...

Dad is having a pretty good day. He slept really well last night with his sister not keeping a close eye on him!! We are going to have to trust that the nurses will watch him closely since being back to work will make it nearly impossible to spend nights with him. He isn't the best patient since he jumps right out of bed in his sleep and has already taken a couple of spills... They haven't made it too easy to trust them so far since last night I was called and told that they asked him what medication he was supposed to be taking! Seriously??!?!?!? You ask a patient who has had an operation on his BRAIN in the last 10 days what medications he is on??? He can't even tell you with 100% certainty what he had for breakfast!!!!!!! There was also a detail list in his file that they just hadn't found yet... you mean, you didn't LOOK FOR IT! oh myyy.... I would not want to be a nurse after watching what they do closely for the last 2 weeks, but I feel that there are some things that common sense should tell you. Like maybe that asking a patient on a neuroserg floor what meds they are on is not the best idea. Anyway, it was all figured out and he is back on track now! He is in pretty good spirits today and was resting this afternoon when I left and has had some visitors since. Dr. Englebrect (sp?) was in to see him this morning. What a nice man. We have been very lucky to score fantastic doctors, and all with great bedside manor. He is supposed to me meeting with Dad again tomorrow. Ok, back in to see him again now!

It is very strange being home. Good, but strange! I think it was in my mind that when we got home everything would be ok... anddddd, it's still not! Dad was pretty tired last night after a long day. Mary Lynn stayed with him through the night so hopefully it all went well. The phone in his room doesn't seem to be working and my cell phone is broken altogether so I haven't been talking to them this morning. I am finding it super hard not being there all the time, but I have to get some rest since I'm back to work tomorrow... The doctors are going to meet with him tomorrow too so hopefully they will be able to chat with one of us after work as Dad is still a tiny bit too confused to relay everything that they say to us. Going in to see him now and will update when I have some info!

Touched Down!!!!

We have arrived!!!

The word came this morning that the flight was left to come get us! We wouldn't let ourselves get excited until we actually were landed back here, but it happened! Touched down at around 3:30pm this afternoon! Finally able to spend some time with Mary Lynn, Fred and Rick as well as I'm sure another few visitors after them. He will sleep well tonight that is for sure. He has been feeling pretty good all day. :) It will be weird being able to get away from the hospital for a while! Will update again tomorrow.

The latest is that we should be leaving the hospital tomorrow am at 10:30! I am not getting my hopes up until we are in the plane and it is flying. Mom came up tonight and is staying with Dad tonight thankfully so I can sleep! He has been feeling unwell all day - most likely because of the blood pressure issues. There were a couple of the episodes where he passed out and it was super scary but once they explained it, it did make sense. It was when he had been lying down and then stood up. His blood pressure droped really quickly. There is a name on it (ending with hypertension) but I can't remember it. I am just glad it wasn't seizures like they initially though after the first one this morning. They were saying that his body has been through a lot and it is healing so hopfully this isn't too out of the ordinary. Dr. Fleetwood was in today again to check on him and he wasn't concerned about it. He said once his body regains strengthn through eating, resting, and getting up and moving around he should feel much better. Lets hope so! Fingers and toes crossed that we will be home tomorrow!!!!

So, the problem with the plane still isn't resolved. They said it could be tomorrow morning, but as per usual, they can't guarantee anything. This is just so unfair to everyone. Most importantly for Dad. It is heartbreaking to see him so sick and tired, yet he can wake up to ask me if we have any info on the flight. He wants to get home so badly. It's super hard being up here now for almost two weeks with very little sleep... spending a freaking FORTUNE on hotel and food... using up sick time... esspecially when we will most likely be back here in a couple of months... How is that even possible! I will barely have enough sick time left to come up with him at all if it is before summer... uhhh!!!! Not to mention, the emotional drain of being in a hospital with a sick family member 24/7 and having little support here... I hope they have a good psyc ward because I'll be be checking in pretty soon! If having family around is such an integral part of the healing process, why would they make this so difficult?
It also must be costing the NL gov more money to have him here than at home... AND they don't have any beds left on the neuroserg floor where Dad is, so people are left down in ICU or on other floors which isn't fair to people from here and must be costing the NS gov extra money. It is just brutally unfair from all sides. ESPECIALLY when we now know that we have the equiptment and trained doctors at home, and it is just a political issue holding up the availability of the coiling procedure at home. I am much to frustrated. Please God we get home tomorrow or I may just take him in a wheelchair to the airport and take him home myself.

Rough day...

We still have not heard from the air ambulance people... when we called this morning they said the plane was still in being serviced and they would let us know... Unbelievably frustrating. Dad is not feeling the best today either. When we stands up his blood pressure drops quickly and he has passed out twice, followed by vomiting and sweating. Of much less importance, but very annoying, my cell phone charger is broken and is dead. Blah... If we are still here tonight Mom is going to come up - it is too hard for just one person since Dad does not want to be left alone for a minute!!

Met with the Doc

Just spoke with Dr Fleetwood. He told us that during the coiling/stenting they were not able to restrict all blood flow to the aneurysm but they aren't sure how much blood is still trickling into it. In a couple of weeks while at home he will have a repeat angiogram to check out how the clotting is coming along and see how much blood is in the aneurysm that is fresh since the coiling. Once we know this we will be in a better position to decide on the next step. Our (well dads and the doctors) choices pretty much are to have the aneurysm removed surgically (high risk of bleeding, stroke, death depending on how mug it is clotted) or leave it alone. Depending on how much blood flow there is, leaving it there could have a high chance of second or third bleed. Also he said if it was left and a significant bleed or rupture was to happen it would be very difficult if not impossible to repair. He would also have a high risk of stroke, especially if he doesn't take his plavix (sp?), which is a blood thinner. He said that he isn't convinced that the episode Dad had two weeks ago wasn't more from the infection in his blood than the aneurysm.... I guess that isn't something that is easily pinned down. It was nice for Dad to meet him and for him to have the opportunity to ask a couple of questions.

We haven't heard anything else from the air ambulance.... Just waiting...

Ohhhhhhh myyyyyyyyy.....

Yup.... Flight cancelled just in time for Mary Lynn to book her flight home and foe Chris to cancel his flight up here tonight for the weekend. Dad and I are very disappointed but he doesn't seem to be feeling the rage that I am. That being said, Colin with the air ambulance just called and said they were on getting ready to leave when a mechanical problem was detected so the mechanic will be at least 24 hours. One good thing though, they were coming just for us - not with another patient which is very nice of them. Well, not really - that's the way it should be when they send someone away for something not available home. The nurse practitioner (who is fantastic) came in today to tell dad about the aneurysm and showed him pictures of it. She explained that he will need to get it surgically removed and he seems to be processing that ok. He said that he didn't have a clue what an aneurysm really meant before she explained all that and that someone might as well have told him he was pregnant. He was concerned when she explained how large it is and that it is one of he biggest she has seen - and rightfully so. We have all had weeks to come to terms with this - he has only had a day or so. Dr Fleetwood never did show up yesterday so we are hoping to see him today as he is in surgery now.

False alarm.... Can't come until tomorrow because of plane availability.... Not sure how that changed in 3 hours.... #%*#!!!!!!

We are coming home!!!!!!!!!! 10am were leaving here!!!!!! Thank God. The resident doctor said to him and Mary Lynn this morning "see you in a couple of weeks to remove that clot" so I guess that is the plan? I would be nice to be a part of that plan and at least know about it!! Ok see you all home lunch time!! Woohoo!!

On the list - trying to be patient!

Well he is on "the list"!! And hopefully on the top of said list. Not quite sure if he gets that going home means to the HSC and not home home but its a step closer none the less. We are waiting for a visit from Dr. Fleetwood now who will hopefully explain the next steps for us. It is good that Dad is in a position now that he will be able to understand and be a part of the decision making process. We have many questions for him and will relay the info when we get it. We had a visit from the physiotherapists this morning and they had Dad up walking around a bit and he has a walker now for getting to the bathroom and the patient lounge (which by the way is a beautiful room with lots of windows, leather sofas, and a flat screen tv!). He seems to have his appetite back and he food here is actually really really good!! I have been finishing what he doesn't eat to save on trips to the cafeteria haha. He isn't sleeping very well - or at all really, at night. This was an issue before the bleed as well so maybe the doc will have some advice. Ok I'm getting to the boring stuff now - I will update when I have something interesting to say!

Day 12 in hospital.... 8 in Halifax!

Well we are finally out of ICU and back on the 7th floor where we started here in Halifax. The nurses are all commenting on how dad is like a new man! He's having another great day here today, although he is tired after a night with little sleep. His feeding tube is out and he is back on the good stuff - had a chicken sandwich and soup for lunch. He's sitting here now drinking a glass of pepsi and doing a sudoku puzzle. Unbelievable. Were getting a move on the air ambulance. Mary Lynn was talking to the director a few minutes ago and they don't have his name on the list yet but he said it's too bad he wasn't ready yesterday because they were here with another patient. Arrrrgggggg!!!!!! I don't want to wish someone gets sick enough to come here.... But I do! Haha. Will let you know when we have more info on his return home.

A great day!

What a day! Dad was awake most of the day chatting with myself and Mary Lynn and even cracking a few jokes! We were like too fools we were so excited about every little thing he was doing. He even ate (well clear liquid) for the first time since last Friday! I was starting to worry that the way he had been the lat few days was going to be the new dad. Thank god he was himself today. It was so good to see his sense of humor back - as dry as it might be haha. He was asking questions about what happened to get him here and was wondering about what's happening at home now. He knows about the aneurysm but we didn't get into what still lies ahead. We are just so lucky to have him with us right now after this horrible week. Now we just need to get him home!!! Thank you all for the support, messages, and prayers. Writing things down on this blog helps me reflect on what is happening and the fact that people are reading it helps haha. It is unreal how many page views there have been... Right now we are at 3,500 views in 6 countries!!!!!!! Imagine that! Unreal. Anyway, hopefully tomorrow we will get some more info about getting him home ASAP even if it has to be on a commercial flight. Be in touch tomorrow.

One whole week in Halifax...

Great morning so far after a really relaxed night. Very little pain and he slept soundly for most of the night. This morning one of the doctor told dad about his aneurysm and that he was in hospital etc and when I went in he told me what the doctor said and remembered it all. When Mary Lynn asked if he was having any pain he said "no, I'm just feeling confused". So it's good that he is more aware of that! He can't remember any of the last few days or how we got here but thats ok... We were told he wouldn't remember any of that. I just hope this improvement continues!!! Taking a nap now while Mary Lynn visits with him but I will update again once he is moved upstairs out of the ICU.

Update from last night I forgot to post

Dad had a lot of sleep today! He was up in the chair for about an hour but even then he was falling asleep... I guess that's because yesterday he was so awake. He hasn't had as many hallucinations I guess because he hasn't been on as many pain meds. The cramps are much better - only a few today. They decided to treat the abscess with antibiotics which seems to be working. Thankfully he didn't need to go through another surgery for that!! We are still waiting for a room outside the ICU. Mom and Adrienne are gone home so me and Mary Lynn are switching up the night shift... Hopefully he will have a good night. Still putting out my feelers for any contacts with the air ambulance people... Anyone have any contacts?

Halifax, I am getting very sick of you!!!

Still in ICU right now but checking on a room in the imcu (intermediate) where he was when we got here because he is medically stable right now! Mentally... not so stable. Again today he is very confused and still hallucinating pretty much all the time. He pulled his feeding tube out and tried to poke it back in but it got kinked so they put in a new one. He is still agitated with all the tubes and restraints. They're going to get him on the list for an air ambulance home tomorrow morning but it could take weeks before one comes. I still can't believe that they would send someone here but not come get them!!!! It is super hard being away at all but the fact that we are just here now when we could easily be home is BRUTAL! Especially that we are all using up our sick time and paying out of our own pockets for hotel/food.... Crazy. Can't imagine being in a position where we couldn't be here for financial reasons like I'm sure a lot of people are. It's not like we are going to leave him here alone!! Uuhhh!!! Clearly it isn't only dad who is agitated here today. Update again later.

Update

He has been awake most of the day and talking a lot. However, he is very confused and having lots of hallucinations. It could be a side affect of the pain meds they have been giving him for the abscess. Cramps seem to be calming down. Still no word on if they're going to do surgery for that...

Good morning!

Things are looking up here today! He has been awake a lot this morning and saying more too. Still waiting on surgeon to have a look at his CT of his belly. They may drain the abscess (which is a minor surgery) or possibly be able to treat with antibiotics. Hoping to find out soon.

The stomach issue is an abscess that will need to be drained. Hopefully that will be early tomorrow as it is causing a lot of pain. Mary Lynn and I are taking turns with him tonight. Thankfully the waiting rooms are much more comfortable here than home.

Not a terrible day finally.

Just was in with Dad and he was the most awake I have seen him in two days. He also asked "how long I been down here?"!!! We were very excited. This is the first sentence he has put together since surgery. His blood pressure has been very low but is much more regulated now even with decreased medication for it. He seems to be having some bad stomach cramping that is causing pain but fits with what the docs were thinking about the possible infection in his bowels. He nodded his head when we asked if that's where his pain was so he is understanding us. Also

Adrienne is here now too.

Still in ICU

He is still in ICU today. He pulled out the breathing tube early this morning but they didn't put it back in because his breathing has regulated. Good sign. His blood came back positive for infection which could be causing the sleepiness and whatever else... They are going to do a CT of his stomach now because they think that is where the infection is coming from. When we went in this morning he looked at us and knew us. The nurse asked him who we were and he said "Mary Lynn and Molly". Close enough! At least he said something that makes sense - better day than yesterday.

Staying in ICU for at least tonight. A bit of swelling showed on the MRI but that is it. Marylynn is staying with him tonight and he has his own nurse. By the way, her name is Carmel which was Dad's Mom's name... Maybe that is a sign...

Dad is moved down to the ICU now. He is sedated right now. They just took him for an MRI and another CT...

News..

He has been having what looks like seizures for the last few hours. He has had some periods of semi consciousness but not very responsive. Did a chest xray and ekg to rule out heart issues. Another CT done looks the same as yesterday. Horrible. Mary Lynn is on the way for her own sanity and ours. This is really really hard. Please keep praying. :(

Another day...

I'm just waiting for Mom to get ready and go back into the hospital. We both slept a solid 10 hours last night, so we should feel a little more alive here today. I can't comment on Dad right now because I havent seen him since last night, but a few people have asked when we will be home, so I wanted to answer that - we don't know.

There are a couple of reasons behind that. Number one, Dad and I came here in the air ambulance. The NL gov has no problem sending people up here, but apparently they don't like to pick them up. If he was to come back in the air ambulance he has to wait for someone to need to come here (or to Ontario) and they will bring him back with them.

Before the procedure, the doctor has said that if he was stable in a few days and everything was looking ok, he could fly back on a commercial flight. In his current conditon (well since last night - maybe things have changed by this morning), I really do not see that happening. He is pretty much asleep 70% of the time. When he awake, often he is frustrated because he cannot communicate the way he wants to, or he is agitated with being in the bed, tubes and wires, etc. So right now, I have no idea when we will be home - or when he will be home.

I find this pretty frustrating because we have also learned that at home we DO have the medical equipment to preform the coiling procedure and the Government has spend LOTS of money training people to do the procedure... they just haven't done one yet! Not that I would want Dad to be the first but they probably should get that started!

When we were in hospital at home I remember talking to someone who had connections with the flight director for the air ambulance... WHO WERE YOU? If you read this - maybe you could put your feelers out there. Dad's name isn't on the list yet because he isn't ready to leave here anyway, but I would imagine it will be there soon - in the next day or so.

He is receiving great care here, but for my and mom's sake, it was be amazing to be home so the rest of the family could help out too. And it would be great for the rest of the family's sake too because I can't imagine how you all are feeling right now.

Anyway, we are leaving for the hospital now and I will update on how Dad is once we get there and get a feel for how the night went.

The end of a very hard day...

The CT didn't show anything. they're thinking the language issue could be caused by pressure. During the procedure last night there were 16 platinum coils put in the aneurysm (the part where there was blood flow not the whole thing). That extra mass is bound to cause some swelling. We are praying that as swelling goes down, he will regain his speaking ability. It is a sin seeing him like this... Really really hard day. He is in good hands with his nurse Jenny tonight... First time without me spending the night but Mom and I both trust Jenny to keep him a calm as possible. Looking forward to sleeping in a bed. Be in touch tomorrow when we know if anything is changed.

A pause in the waiting...

In for his CT now. No real change with his speaking. Said hi and yes a couple of time that is all. Maybe an F bomb or a J-C here and there for emphasis.

Not speaking except the occasional word. Some repetitive nonsensical things... He understands but that is probably more upsetting to him than if he didn't. Hard stuff... Waiting still fora CT...

Update from Mom: he is much more relaxed now however he is having trouble verbalizing. They are going to do a CT to see what's going on.

Morning after surgery

Good morning... As I said last night the surgery went as they expected. One thing I forgot to mention yesterday was that there doesn't appear to be any brain damage caused by the aneurysm. Dad had a hard night last night. The confusion seems to be much worse at night and he wasn't making any sense. It could be some blood on him brain that will hopefully drain. It could also be swelling from the surgery. He wasn't answering any questions last night but he did know me ... Although he called me Adrienne a couple of times. Mom is gone over with him now - I needed to get out of there for a few hours. Will update later today. Ps Happy Birthday Jessie xo

Night time is the worst...

"who laid down in the old athabasca"... Anyone know what this is? He has been singing it over and over and over. Would love to know if it actually is anything. Leave a comment if you know or have any idea... Not having the best night here he is not himself and very very agitated with the incision is his groin.

It all went as planned. Hopefully he is nice and relaxed here tonight.

Nearing the end

Just updated that they are finishing up and he will be in recovery in about half an hour and will be there for an hour. No news on how it went but couldn't be too bad if they are at this point. Will write after speaking to doctor.

Finally getting the procedure ...

Dad is gone in for the procedure. They are putting stent in to keep the blood vessel open that is providing blood to all parts of the brain. They are coiling the middle of the aneurysm and blocking the vessel that is feeding it. The reason they can do this is because the other artery is proving blood across the brain. Will be several hours before he is out. Will update as we hear more. It sounds pretty promising. They do this particular procedure often.

He will be coming home in a few days back to hospital and then receiving rehab. Back here in about 6 weeks to remove aneurysm hopefully.

Patience is running low!

Dad's amazing nurse just informed us that Dr Fleetwood is going to be in surgery all day and it appears that it will most likely be tomorrow before dad's surgery.... Oh my oh my! Because it is a complex procedure its good that they are taking their time deciding on the best option. They are all super nice and tell us all the details. On another note this hospital is wicked and the nurses have been fantastic especially the one who was on yesterday and today in the daytime. Dad trusts her and is letting her do everything. He is very relaxed with her. The nighttime nurse was great too but Dad seems to have something against her - she dealt with him very well though. He is being well taken care of.

Update..

Got a wash and a shave... Sat up in a chair for a bit... Feelin good and down for a nap now. Still waiting to meet with the doctors.

Long night

Long night of pulling out tubes, ivs, and trying to break out like him and ric apparently did years ago.... Oh my... Lots of confusion... Its not easy to keep telling him no Dad your in Halifax at the hospital... No Dad that tube needs to stay in for blah blah blah... Yes Dad you need to take the pills... Hopefully they will get him into surgery ASAP now this morning. There is a chance it won't be till tomorrow if they need additional equipment. Will update when we hear from docs.

Some good news

Spoke with Dr. Mahoney tonight after Dad's angio CT and he told us (now this is in laymans terms) that the blood flowing from the arteries on each side of his neck are sending blood to both sides of the brain. This is good news because if it happens that an artery or part of an artery needs to be sacraficed during surgery, all parts of his brain will still receive blood. Tomorrow is his procedure - the doctors are planning on sitting down around 9:30am to review everything and make their game plan on how they will secure the aneurysm from reciving blood and continuing to grow. Depending on how this goes, it may be 6-8 weeks before part two. He has settled down a little and is sleeping this evening. Long day for him and us tomorrow. Wish him luck!!! He certainly has had some luck up to now!! Thinking about everyone at home and wishing we were all together... xo

Nicole

So far...

WWell it is safe to say that this has been the longest few days of my life to date. Although we have tried to keep as many of our close friends are family in the loop it hasn't been easy. Myself and Mom are in Halifax with him right not which means keeping in touch will be more of a challenge.

This morning as soon as we got here we met with Dr Fleetwood(neurosurgeon) and Dr Mahoney (radiologist). They told us they wanted to do an MRI and another angiogram to get as much info as possible. They are looking at how each artery supplies blood to the brain and if here has been any brain damage to avoid further damage or strokes. They both are very knowledgable and seem like a great team. Dr Mahoney would be the one to put the stint in the artery to close off the aneurysm to blood flow.

If all goes as planned, they will work on removing the aneurysm in a couple of weeks. Not sure if Dad will be home in-between or not - we will have more information tomorrow when they have discussed and analyzed the results of today's tests.

He is a little cloudy here today. Convinced we have committed him ...but we are staying with him and keep reassuring him that he is here to get better. Let's all hope he is regulated a bit by tonight - today has been a lot to handle for him.