Neurology follow up appointment: Friday January 16, 2015.

The lead up to this appointment involved a lot of planning: what questions do we want to ask, what will we find out?

Dom has been back at work full time; 2 days in the office & 3 days from home, for about 2 months now.  The most obvious hurdle to resuming life pre-stroke has been Dom not being allowed to drive.  So the goal for us was to get a plan in place to see Dom driving again ASAP...so that he can stop driving me crazy! :-)

Dom had an MRI in December & we got the results on Jan 16.  The MRI showed that the clot is shrinking!  This is fantastic news & is exactly what the Neurology team were wanting to see!  The MRI also showed a small number of dead brain cells; this was expected as the stroke did cause brain trauma for Dom.  After the doctor asked some questions regarding Dom's cognitive and motor skill abilities it was determined that there has been no effect (at least not an obvious effect) as a result of these dead brain cells.  It is an extremely small number and so the doctor was not surprised by this either.

The changes in Dom that we have noticed since he had the stroke could possibly be caused by the anti-seizure medication, so we are hopeful that these small differences disappear once this medication is no longer needed.  The changes are small, and we are now used to them.  Dom & myself are probably the only ones that really notice these differences; other family and friends wouldn't even realise that there is a difference.  For example, Dom is now more short-tempered and gets very angry, very quickly.  Having said that, he is aware of this and does try to control himself...not so well when Carlton lose though!  Another small change is that Dom speaks his mind more in public than he ever did before.  We are both very open with each other, but would always keep some thoughts to ourselves when out in the big wide world...at times, to me, it seems like Dom forgets where he is and will say something to me that has me cringing & looking around to make sure no one else overheard him!  Again, this is tiny, and others wouldn't notice these changes, but I do & initially, it seemed to be major to me, but now that I'm used to what I lovingly refer to as 'Dom 2.0' it is not a big deal.

So the outcome of the Neurology follow up appointment:
- Dom will come off the anti-seizure medication over the next 4 weeks; gradually reducing the dose.
- 6 weeks from the last dose of anti-seizure medication Dom will be able to drive again; provided there are no relapses now the anti-seizure medication has ceased.
- Dom will remain on warfarin as the clot is still there (but shrinking), and his Ulcerative Colitis and genetic predisposition to clotting has him at a higher risk of having another clot.
- Another follow up appointment has been scheduled for March, 2015 to review his progress again.

Dom & I were both really happy with the outcome of the appointment & I am already thinking of places Dom can take me on a date once he returns to driving!

Chillaxing in Lincoln Park, Carlton before the Neurology appointment at RMH.

This has been a wonderful start to 2015 & we look forward to continuing improvements in Dom's health as well as going on lots of adventures!

Stroke Week: Raising Awareness through Dom's Journey.

On Wednesday September 10 Dom & I got up nice and early to go into RMH to attend a presentation Dr Matt was giving on Dom’s stroke.

It was an amazing experience to sit in a presentation being delivered to professors, doctors, surgeons, scientists, registrars, medical students and I’m sure a whole host of others we weren’t even aware of!  We got to meet and thank Professor Davis, and also Mo, the Neurosurgeon responsible for the successful hemicraniectomy procedure on June 27. 

Dr Matt explained that he chose to present Dom’s case as it was Stroke Week and he thought it was a great way to contribute to raising awareness about stroke.  Dr Matt explained Dom’s background - you know the key stats i.e. age, pre-existing medical condition etc.  He then went on to detail Dom’s journey from his arrival in the RMH ED right through to his transfer to Rehabilitation, stopping to explain all the CT scans and MRI/MRVs in between!  I had a strong understanding of this whole process as Dr Matt was remarkable in ensuring I was kept up to date and informed about each scan and what they were considering in the early stages of Dom’s treatment.  Although I’d explained all this to Dom (and of course he read my blog!) it was a fantastic chance for him to hear about it all straight from the Dr! 

Dr Matt showed these CT scans along with many more.  As you can see the clot is quite obvious (of course once I knew what I was looking for it became obvious - kind of like a pre-natal ultrasound I suppose...it all looks like a black & white mess until the obvious is pointed out!) 

This scan shows the affected area of the brain - this isn’t a bleed, although there is a slight one, this area is the part of Dom’s brain that was affected due to the clot.

This scan is after the hemicraniectomy – as you can see quite a large section of the skull was removed and now that it’s out of the way, the brain has swelled to outside the area enclosed with the skill!  This was obvious after the surgery – one side of Dom’s head and face appeared to be swollen – turns out it was!

It was amazing to see this pictures as part of Dr Matt’s presentation and very educational!

Dr Matt went on to show these video's he took of Dom six days after surgery.  It shows how severe the paralysis was (although movement had begun to return when Dr Matt recorded Dom).  It also shows how confused Dom was.  When Dr Matt asks how long Dom has been in Australia for Dom begins to go through his numerical process where he would normally solve this type of problem by taking the current year, 2014 and then subtracting the year of his arrival from it.  He continues to repeat ‘2014’, and he either cant remember his arriving in 2000, or he is unsure what to do after determining ‘2014’.  This is hard for me to watch because as Dr Matt moves on and asks the next question I can see in Dom’s eyes that he is still thinking about the previous question and trying to work out how long he has been in Australia for.  He is unprepared for Dr Matt’s next question and cannot move on from the previous question.  It’s almost like he gets stuck and can’t let it go to continue answering other questions.

This visit to RMH was Dom’s first since being transferred to rehabilitation.  It was good for him to go back – he remembered sitting in the wheelchair in the cafeteria with his visitors.  He remembered going up and down in the elevator when we would ‘escape’ Stroke Ward for a break and fresh air.  This visit gave him a bit of closure as he was able to ask questions and continue to piece the memory fragments and bits and pieces from my blog to form full days.

Recovery Stage 1

From HDU to Stroke Ward

On June 30, when I went in to visit Dom he looked pretty good - he seemed more alert and responsive than he had the previous few days.  When I arrived I spoke to him...asked if he missed me (he nodded his head 'yes').  I told him that I missed him and was dying for a hug!  He brought his left arm up to my right shoulder and pulled me down to him.  I cried on him while he rubbed my back.  Amazing how you don't realise how important a hug from your husband is until you can't have one whenever you want one anymore!  I quickly pulled myself together and focused my attention back on Dom and his recovery.  He was so happy to have the cerebral drainage tubes removed, he could feel them sitting on his pillow but couldn't move around to see what they were so they were a point of frustration for him.  It was such a small thing to have done, but seemed like a massive step in his recovery.

On July 1 he was assessed by the physio, Rosy, and she determined that Dom needed to sit in a chair.  As he hurt is back during the seizures he was hoisted into a reclining wheelchair that would allow him to lay back enough to take the pressure off his back.  He was very alert in the chair, but tired very quickly as he was in a position to visually take in more than he had been able to whilst lying in bed. Also, he was still in a bit of pain despite reclining the chair and this wore him out pretty quickly.  

Sitting in the wheel chair for about an hour each day became part of his routine.  Along with his neurological observations which consisted of questions like:

- What day is it today?

- What month are we in?

- What year are we in?

- Do you know where you are?

Dom explained to me a couple of weeks ago that he couldn't understand why the nurses kept asking him these questions.  At the time, he said he remembers thinking, why didn't you write the date down when I told you the last time?  And he said the "Do you know where you are?" question was so frustrating because he wanted to tell them that obviously it was a hospital and did it really matter which one...he wasn't going anywhere so he didn't need to know which hospital he was in.  He said that he remembers sometimes just pretending to be asleep and not answering the nurses when they'd come to ask their questions because he "couldn't be bothered with their stupid questions", he explained, "I knew the answers were in my head so that was enough for me".  

Dom was moved out of the High Dependency Unit and into Stroke Ward on the 2nd of July.  This was excellent news as it was another step in the right direction for his recovery.  He had a little more privacy and didn't have to be monitored as closely by the nurses. 

Dom was still unable to move the right side of his body.  He had sensation in his arm, leg, hand and foot, but no movement.  He didn't seem to be too concerned about this; just a bit pissed off that he couldn't get his arm and leg to do what he wanted them to do. I didn't question him about the movement, I just kept reassuring him that it would get better and he would be ok.  I couldn't imagine what it would be like to go to work one day and then the next thing you are aware of is being in the hospital with paralysis in the right side of your body and part of skull missing. It would be so scary and so the last thing I wanted was for Dom to worry about it.  

On July 4 Dom was visited by some staff from the Rehabilitation clinic. They did some assessments and told Dom he was now on the waiting list at Royal Park and also Sunshine Hospital.  This was great news!  However, their assessments brought to Dom's attention how much paralysis he had and exactly what sort of condition he was in.  He hadn't been sheltered from his condition, the stroke, surgery or the paralysis...but all of the time I'd been spending with him I was positive and kept reassuring him.  The rehab staff spoke to Dom during the midday rest period when visitors were asked to leave the ward.  So he was left alone to ponder their questions about transitioning home. When I returned for the afternoon visiting period he was very frustrated, angry and depressed.  The rehab staff asked him questions like "Is there anyone to care for you if you leave rehab still requiring a hoist to move from a bed to a chair?"  I was not allowing myself to dwell on what sort of movement and mobility Dom would have when he came home - we'd just been informed he was on the rehab waiting list, I'd been focused on him getting better not worrying about what he'd be able to do when he came home. These questions were a big blow to Dom's confidence and mental state - he was no longer as confident in his ability to recover as he had been prior to their visit.  

Dr Matt came in and asked Dom if he'd allow Dr Matt to video tape some neurological assessments to use in a presentation he would give to his colleagues about CVT as it is so rare he wanted to take the opportunity to present it to others in the field.  Dom was hesitant to agree - he felt like it wasn't fair that all this had happened to him and he didn't want to be videoed doing things that he couldn't do.  He nodded agreement to Dr Matt and after he left us I spoke to Dom about looking for a positive out of all this. We needed to focus on how we could make the best of the shit situation.  If a positive was that we could help educate other doctors so that they could be aware of the symptoms of this type of stroke then perhaps other young couples wouldn't have to experience what we had.  I explained to Dom how lucky we were that he had the stroke at the Flinders Street station, because this resulted in him being taken to RMH where the Neurology team were directed by Professor Davis who was familiar with CVT and the treatment of it.  We were so lucky that Dom's gastroenterologist has had other UC patients suffer CVT and he was in contact with the Neurology team treating Dom.  We were lucky this whole thing happened the way it did.  Its horrible it happened but it could have been so much worse.  That's what I keep telling Dom to this day...when it all seems to be a little too hard we always think about how much worse it all could have been.  

How it all began...

Background

My husband is 30 years old, fairly fit, healthy and active.  He works in IT as a Cloud Technology Consultant.  We have been together since 2005 and have been married since Jan 2012, we have a 4 year old labrador.  

Dom was born in Southern India and migrated to Australia in 2000.  In 2011 he was diagnosed with an Inflammatory Bowel Disease known as Ulcerative Colitis (UC).  He takes medications to manage the UC and has been in a relapse since November 2013 - one week prior to the stroke we were considering having him hospitalised so he could receive IV steroids to try to get him back into remission.  One of the medications he takes is an immunosuppressant.

So how did he go from a disrupted work week because of the UC flare up to having a stroke?

June 25

6pm 

Dom collapsed and had two seizures on the platform at Flinders Street Station in Melbourne.  An ambulance was called by 'unknown' and my husband now remembers waking up to paramedics saying his name.  They asked him what was wrong.  He was very confused and was in excruciating back pain; so that's what he told them.  During the trip to Royal Melbourne Hospital the paramedics gave my husband his mobile so he could call me.  This was the strangest conversation I've ever had with him.  He was in a lot of pain and was extremely distressed; at the same time he sounded terribly confused.   I managed to understand that he was in an ambulance and on his way to RMH, so I left work to meet him there, with the understanding that he had hurt his back (he has a history of bulging discs in his lower back, so this was not an unusual as you might think).

The only person that was with Dom when the paramedics arrived was an intoxicated man - Dom remembers hearing him asking if he was ok and the paramedics asking him to move away.  This man told paramedics Dom had had two seizures, but as my husband was able to communicate with paramedics they disregarded the witness' statement.

7 pm

I arrived at RMH Emergency Department at about 7pm and was taken through to room R3 to see Dom.  He was very upset when I arrived and when I spoke to him he didn't make sense.  He could pronounce words clearly, but the words he was saying didn't match my question or have anything to do with what had happened to him.  He had blood around his mouth and four lacerations along one side of his tongue where he bit it during one or all of his seizures.  The nurse informed me that he had a seizure in the ED not long before my arrival - this explained his confusion.  I provided the ED staff with a medical history for Dom and this information had them thinking along the lines of a brain infection to explain the cause of the high temperature he was experiencing and the seizure.

9pm

Dom had about an hour of alertness and was able to inform the medical staff that he remembered having two seizure on the platform (something he has since not been able to recall) and that he had hurt his back and couldn't sit up due to the pain it caused.

10pm

Dom was taken for a CT scan.  This showed a shadow on the front left part of his brain which the staff thought may have been a slight bleed caused by an infection.  He was on IV antibiotics.  The elevated temperature slowly returned to normal.  

I paged his Gastroenterologist, Dr. Connell, to ask for a list of medications. (If you take medications write them on a piece of paper and put them in your wallet or purse - somewhere someone can access them!)

June 26

2am

Dom was taken for a second CT scan.  This showed a clot in the brain - superior sagittal sinus to be exact.

Source: http://stroke.ahajournals.org/content/42/4/1158.full

This then started the long and extensive discussions surrounding where in the hospital Dom would be admitted.  I remember a Neurologist, Neurosurgeon and a doctor from Infectious Diseases all coming in to examine Dom and ask him a range of questions (the majority of which he couldn't answer accurately; he was again very confused and was saying the wrong words, but with such confidence he was very convincing!)

7:30am

Dr Connell rang me for an update. When I told him a blood clot had been found in Dom's brain, Dr Connell asked if it was 'superior sagittal sinus (this was too many 's' words for me especially after having had no sleep for abut 18 hours!)  I passed my phone to the Neurologist that works out of the RMH ED - they shared notes and now RMH were aware of the connection between UC and the stroke type known as CVT - they didn't inform us of this news until later in the day after running more tests.

10am

Dom was taken for an MRI and would then be moved to the High Dependency Unit in Neurology.  I headed home with the intention of having a sleep...we all have the best intentions don't we?  It was nice to have a shower and some food.

I headed back into RMH with my brother-in-law; we met his parents and sister-in-law there.

2pm

Dom was settled into HDU in Neurology.  He was fairly unresponsive to me when I returned to his room, he didn't acknowledge me at all (but could form a small smile for his blonde nurse! She was lovely so I won't hold it against her; also very conveniently her name was Jess...).

He was now on Heparin (blood thinner medication through his IV) as well as the IV steroids.  The steroid dose was close to double the maximum dosage he has ever taken which contributed to his lack of responsiveness as he suffers from intense mood swings as a side effect to the steroid medication.

4pm

We were informed by the Neurological Resident Dr Matt that Dom had had a stroke, known as Cerebral Venous Thrombosis (CVT).  This is a rare stroke with the clot occurring in a vein and not in an artery.  This explained why Dom had not been presenting typical clot symptoms - the ones we are told to look for: 

Source: www.strokefoundation.com.au
These are crucial signs to look for if you think someone has had a stroke!
Memorise these signs...F.A.S.T!

6pm

Dom was now showing F.A.S.T symptoms.  He could hardly talk and had complete paralysis on the right side of his body.  He still had feeling, just not movement.

What were we thinking & feeling?

This was obviously a shock and so unexpected!  Dom is 30 for goodness sake!  We both had a cry together...we were scared about what this meant for our future.  Would he get better? Would he regain what he had lost, and if so how much?  Would he be able to play his guitar and sing me songs ever again?  Would he be able to play his PlayStation 4 again (I lined up for ages for the bloody thing!), would he ever be able to use a computer again?

Dom couldn't talk...but after knowing each other as well as we have and done for the past 10 years I could read in his eyes his thoughts and feelings - they mirrored my own! But I was adamant we weren't going to dwell on what had happened...instead our focus would be on getting better and coming home!  I think the most common phrase I spoke over the next two weeks was "I don't care what he gets back, but I AM bringing him home!"  This was my own little motto - its what helped get me out of bed each day, its what forced me to eat when I thought I was going to vomit from stress and worry...it's what I said to Dom each morning when I arrived at the hospital and each night when I left him.

It's not smooth sailing from here though....oh no, Dom couldn't just start to recover, he had to face another hurdle!

7pm - 9pm

We breached visiting hours rules and stayed an hour later than we should have.  All of Dom's cousins in Melbourne and both his aunties and uncles came to visit him and tell him to make a speedy recovery!  This was very emotional, but it was very reassuring to know we had the support of our family.  

Dom had a catheter inserted and had so many IV tubes coming out of his arms I couldn't touch anywhere except his hands!  I left with the promise of returning and the determined message:

"We will fight this together. You will get better.  You won't stay like this - I'll help you, I promise, I love you always and forever".

June 27

7am

Dr Matt phoned me to tell me the nurses were having difficulties getting Dom to respond to them and he had been taken for a second CT scan.  This showed the brain was swelling too much, but after a consult with Neurosurgeons it was decided the a decompressive hemicraniectomy (removal of part of the skull) would not be performed unless absolutely necessary.  Dr Matt reassured me that Dom was stable, not to rush into RMH and my estimated arrival time to HDU of 11am was still fine.

9am

A conversation with one of my best friends alerted me to the fact that this whole situation could have been very different if Dom didn't go to work on the 26th - I was in a meeting and would not have returned home until approximately 10pm that night...what if he was at home?  What if he couldn't call me or an ambulance for himself?  What if he hit is head on the kitchen bench or coffee table when he collapsed?  What is he was on his back when he had the seizures?  What if he stopped breathing?  What would I have found upon my return home?  Thankfully all the stars in the universe aligned to give Dom the best possible chance for survival.  I am eternally grateful to the positive karma that came our way on June 26.

11am

I returned to the hospital to again have Dom very unresponsive to me (and no more smiles for blonde nurses either, so I didn't take it personally).  Within 40 minutes of my arrival Dom rapidly deteriorated and had two facial seizures.  

Neurosurgeons immediately agreed that the only way to save his life was to perform the decompressive hemicraniectomy procedure.  I verbally consented to the procedure - if I didn't he would have died within hours.  While I was signing consent forms Dom was rushed off to theatre - I didn't get to say goodbye.  This played on my mind for the next 5 hours, but I refused to think I wouldn't get to see him again.

The procedure was a success - no complications! Dom was taken to ICU and was in an induced coma. 

Evening

When I visited him in ICU at about 5pm he was breathing on his own, but had a breathing tube inserted to increase his oxygen levels.  Nurses inserted a feeding tube as well.

Knowing he was now missing part of his skull I expected his head to be a different shape...but it was symmetrical still - that's how swollen his brain was!

Koh Samui, Thailand - 2013

I left ICU at 8pm and retuned home.  This was the eeriest experience for me.  I came home to an empty house...it was quiet...lonely...I was alone.  I had held myself together all day.  Shed a couple of tears here and there but I refused to break down, to think the worst.  If I thought it, it might happen...so I thought about bringing Dom home...I thought about ways I could help him with his rehabilitation, I thought about changes that we could have done to our ensuite; you know, hand rails and things...anything that would bring him home to me sooner rather than later.  But coming back to our house, the home we created together, we designed it, we built it (well the builder did, but you know what I mean), we chose its colours, we used the money from the wishing well at our wedding to landscape the backyard... the backyard our dog was now looking at me from - looking for his 'daddy'.  I walked past our wedding pictures, photos from our trip a year ago to Koh Samui(Thailand)... 

Our wedding, January 2012.

I walked through our home, everything that was ours and represented us; our years together, the ups and downs: our journey...and I broke down...what if it all ended here and now...what if our journey stopped in this moment?  I'm 27 years old - some people see that as too young to be married for a couple of years; it is way too young to contemplate being a widow.  For this one and only night I let myself get lost in these negative thoughts....I sobbed while my brother held me...he held me like Dom does when i cry...but he didn't feel the same, he didn't smell the same...he wasn't Dom. (Are there lots of typos yet...I can't see through my tears anymore!)  I slept in our bed, on my side, wearing Dom's jumper...I would not let him go...I would not sleep in the middle; can't let myself get used to that...he'll be home soon, so I need to stay on my own side!

June 28

I returned to the hospital and was told that once a CT scan was done and doctors were happy, Dom would be taken out of the induced coma, however, they weren't confident this would happen as he was not responding the way they thought he should.  His left hand had to be restrained as he kept trying to pull out his breathing tube (yes, still in the induced coma), and so given this level of movement and coordination they expected Dom should be able to respond and follow the command to squeeze their hand, doctors and nurses had been asking him all morning and got nothing.  They said I was more than welcome to try...so I sat on his left side, held his left hand, said I was here and asked "If you love me, I need you to squeeze my hand"...he squeezed that hard I thought my fingers were crushed!  Doctors were very happy and at 2:30pm they had the CT scan and were happy to bring him out of the induced coma.  

By 5pm he was completely off the sedation medication and was able to answer with his full name when doctors asked "Can you tell me your name?"  Dom remained in ICU overnight and I left him at 8pm with my message: "We will fight this together. You will get better.  You won't stay like this - I'll help you, I promise, I love you always and forever". 

The following afternoon Dom was stable and responsive so he was moved to the High Dependency Unit in Neurosurgery where he stayed for the next four days until he was moved to the RMH Stroke Ward for the next stage of his recovery.

His face was swollen, his head still held its normal shape - he had to have a sticker on the left side of his head that read "no bone".  He had 54 staples in his head where they had removed part of his skull.  It is a long road ahead, but being out of ICU is step 1.