Time flies when you're.....attending appointments?

Where has the time gone?  It has been just shy of 6 months since Dom's stroke and they have been a crazy-busy few months for us.  Dom has had a number of appointments to attend which have been educational and a lesson in calendar management!

On September 11 Dom had to attend RMH for a Pre-Surgery Assessment to ensure he was ok to have the operation to replace his bone flap that was removed on June 27.  This surgery took place on September 18 and was a success!  All went well with no complications – such a relief! 

This surgery was a strange moment for me and an exciting one for Dom.  When he had the bone flap removed on June 27 it was such a rush to get him through to theatre and my consent on the paperwork that I didn’t get to say goodbye to Dom before they took him in for the procedure…I’m thinking I would prefer this option, not the crazy, it's-the-only-life-saving-option, but having the operation sprung on me in circumstances where I didn't have time to think and dwell on the not so positive possibilities, and I think, for me, this more preferable than having time to process the procedure and all of the associated risks standard to any procedure.  I had a whole week to dwell on Dom having this operation – it seemed like the longest week ever!  I had a lot of time to think about the what-ifs…not even going to revisit them to write them out for you!  Needless to say, I lost my positivity at times and was scared about what could happen.  It was wonderful to be able to talk this through with Dom though and share how we were feeling about the procedure this time.  Dom was excited at getting his bone flap back, he couldn't wait to look and feel 'normal' again.

 

An excited Dom before the operation - September 18.

When they took Dom to go through for the operation there were lots of tears…from me…and kisses from Dom to stop the tears!  Turns out there was no need for the tears, he was fine!  He gave Mo (neurosurgeon) a thumbs up in recovery and asked for me to be called as soon as he was transferred to the HDU in 4 South.  Apart from feeling sleepy he was great!  He had a chat with me and my brother, then with his parents, brother and sister-in-law when they arrived, then my mum when she arrived.  He was all settled and asleep when I left for the night…nothing like deja vu walking out of the room that night! But it was nicer to leave knowing he was communicating normally and that it would only be a short stay.

Dom in HDU after the operation.
(Not impressed with me taking a photo!)

On September 19 Dom was moved to the ward in 4 South and on September 20 I was able to bring Dom home.  

Smiling once again - September 20.

He was feeling pretty good, good enough that we were able to go to his cousin's 18th on September 21!  Something Dom and I both didn't want to miss.  Dom had already missed three of his cousin's 21st birthdays because of the stroke and he was determined to not miss another milestone birthday!  He was more fatigued than normal for about 5 days after the procedure, but now he’s as good as new!  In fact, today (Nov 18) was Dom's follow up consultation with Neurosurgeon John Laidlaw at RMH.  John was impressed with Dom's overall recovery and from a neurosurg perspective Dom is healing well and so John has discharged Dom to the Neurology team...so one specialist is now off the list!  

Bronte's 18th - September 21.

We have had a lot of appointments in the past three months!  September 12 was the first follow-up appointment with the Neurologists at RMH.  We saw Dr Bruce Campbell.  Dom remembered seeing him during his initial few days in HDU after his first surgery, so he was excited to be able to have a chat about what happened to him and where to go from here.  We will have another follow up appointment with the Neurologists in January 2015 Dom has an MRI/MRV in December to see what, if any, brain damage has occurred and what the clot size is…if it’s still there.  In the mean time Dom is still on Warfarin to keep his blood thinner so it takes longer to clot.

Dom has also seen a Haematologist to look into the possibility of a genetic predisposition to clotting.  After a blood test it turns out Dom is one of the 3 - 4% of the world's population that is more susceptible to clotting that the rest of us.  This is something that was passed down from one of his parents and many people with this condition live a perfectly happy, healthy life without knowing about this condition.  However, in Dom's case, this was a contributing factor to him having a stroke.  Almost like all the planets aligning...for Dom several factors were in place at the one time resulting in a clot and stroke.  All of these factors are being individually explored to put preventative measures in place.  And so, due to this genetic tendency to clot, the haematologist has recommended, very strongly, that Dom continue to take Warfarin in order to prevent his blood from clotting again.  Won't argue with that suggestion!  So fortnightly blood tests to determine Dom's INR are now the norm for us.

We have also been seeing an Endocrinologist to investigate Dom's mild osteoporotic diagnosis, discovered after an x-ray confirmed a compression fracture of his L1 vertebrae which lead to a bone density test revealing the osteoporosis.  Dom will receive medication on December 19 through an IV which will try to halt the osteoporosis and possibly reverse the low bone density Dom has. This IV treatment will happen once every 12 months for 2 - 3 years and, hopefully, by then his bone density will have improved.

The compression fracture in his L1 has been causing Dom quite a bit of pain so we have been going to Elyas at Optimum Function in Truganina.  Elyas is very knowledgable in the impact stroke can have on the body and of course what the L1 fracture was impacting on including Dom's range of movement and also his posture.  Dom is now a regular client of Elyas and after only two weeks of consultations we are already seeing immense improvements!  

Dom returned to work - full-time from home in November.  This was successful and he has been able to complete full days without experiencing ridiculous amounts of fatigue.  His stamina for daily activities has improved.  On Thursday December 4, Dom returned to work in the Melbourne office.  He caught the train to and from work and worked a full day!  I was nervous and anxious!  I went with Dom to Melbourne for the day.  I needed to, for me.  The last time I said goodbye to Dom before he went to work in Melbourne, he didn't come home for three weeks!  It was an emotional day for me.  I am so proud of Dom for how far he has come in his recovery.  I am inspired by his determination to get past the stroke and get on with life.  Despite working the whole day, and travelling on the train as well, you couldn't wipe the smile off Dom's face that evening.  He was excited that he had done it, that he could do it, and was looking forward to the next time he could get back to the office to work.  Meanwhile I was exhausted....lots of window shopping between Melbourne Central to Collins Street...Emporium is amazing!

The appointments are still coming in and we are still juggling the calendar but we are grateful that we have the opportunity to do that and often think of the other scenarios we could be facing instead of this one…it could be so much worse and for many stroke survivors it is so much more challenging than what it is for Dom & I.  If that’s you then please hang in there…visualise the light at the end of the tunnel and enjoy the small pleasures in life, especially when Melbourne gets a rare visit from the sun to brighten your day; like on a weekend a few weeks ago where we spent Sunday at the State Rose Garden Show!

 

We look forward to celebrating Christmas with our friends and family.  We are grateful for the second chance at life we have now got and won't take it for granted.  However, bring on a happier & healthier 2015 please!

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.

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.