2015 started off positively! Dom was weaning off Keppra (anti-seizure med) and was looking forward to driving again. He had to slowly come off Keppra and be seizure free for 6 weeks and then he could drive again! On Janurary 2 I got up at about 6am and took a pregnancy test...it was positive!!! Dom & I had been trying for about 12 months before he had the stroke, and we had only just started trying again when I took the test! Having a baby is something we have wanted for a few years and I was devastated that it didn't happen right away. Then Dom had a stroke and all thoughts of a baby disappeared for the time being. After the surgery in September 2014, we decided that we would try again. After so many negative test results I wasn't overly hopeful, so it was the best way to start the new year! February 17, four days after his last Keppra dose, Dom had a seizure. It was a Grand Mal and lasted 6 minutes. We were stopped at traffic lights just outside the police station on Flinders Street after coming off the freeway, we were on our way to an appointment with Dom's gastroenterologist. The possibility of Dom having a seizure was always there, it had just slipped our minds. So this seizure took us by complete surprise! I had just asked Dom which lane I needed to be in once we cleared the intersection and he didn't answer me. I looked over and the seizure was starting. I froze! I was so shocked! A million thoughts raced through my mind...the first one, I'm sure was "Oh Fuck!", followed quickly by "shit, where do I move the car to?" I put the hazard lights on as the lady in the car in front of me got out to help me. She could see what was happening in her rearview mirror! The lady opened the back door and I laid Dom's seat back. He was frothing at the mouth so I rolled him over and the lady called an ambulance. The seizure finally stopped and we waited for the ambulance. A policeman on his way to work stopped behind me with his lights on so that we didn't run the risk of someone driving into the back of the car. Dom was taken by ambulance to the Royal Melbourne Hospital and I followed in the car (while shoving sultanas in my mouth! At 6 weeks pregnant morning sickness had truly kicked in...I was hoping I wouldn't vomit in the car!) Dom was restarted on Keppra, after having a second seizure that lasted 2 minutes in Emergency. He stayed overnight in the short stay section of Emergency. I brought him home on the 18th of Feb - the 10th anniversary of us being together! A lovely nurse provided me with a handful of sickbags after seeing me sitting on the end of Dom's bed clutching one like my life depended on it! Morning sickness turned into all day & night sickness!
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| We're expecting a girl! |
May saw another seizure. This one happened at home. We were going to bed (well I was already snuggled in), Dom was in the ensuite, he came out and as he walked through the door the seizure had begun in his arms. I managed to get him to hear me telling him he needed to lay down on the floor. Being 4 months pregnant I was reluctant to do a lot, but I managed to lie him down and this seizure lasted about 4 minutes. I called an ambulance and my mum. I needed her with me in case I was too tired to drive. Funny how I thought of things like that once I was pregnant. Back in June 2014 I drove after a couple of hours sleep. Amazing how my thinking and concerns changed! The ambulance took Dom to Werribee Mercy where he had some blood tests and was sent home at about 2am. I came home with more sick bags - thanks to that lovely doctor! From May things got a bit worse for Dom. He struggled with the fear and anxiety surrounding his seizures. The idea of another seizure terrified him. He would constantly say to me "I'd rather die than have another one" or "if I have another one I hope it kills me". This thinking was insane to me. I had watched every second of his seizures and I could see the pain he was in, yet not once did I think he would be better off dead. Dom's Keppra dose was increased and he suffered the side-effects of that. He became highly anxious, extremely depressed and by July he was having suicidal thoughts resulting in him making plans and giving me passwords and advice on how to manage money once he was gone. I didn't trust Dom to not harm himself while I was at work so he couldn't be left alone. His dad, brother or cousin would stay with him while I was at work. I remember one Friday quite vividly. We woke up in the morning to my alarm and I was feeling quite tired, I said to Dom that I wished I didn't have to go to work. He said to me that I should take the day off. I thought about it, but decided I couldn't. I'd missed too many sessions with my classes because I'd stayed home with Dom or taken him to appointments. My Year 12 class had a SAC and I needed to be there. He was disappointed I said no, but there was nothing I could do. We got ready for the day and as I was leaving I gave Dom a kiss goodbye and asked him "will you be here when I get home?" He had hardly spoken to me since I had said I couldn't take the day off work. He replied "today, I'm not sure, I don't think so. Remember I'll always love you" Well, shit. Walking out the front door after hearing that was the hardest thing I have ever done. I told his brother not to let him out of his sight and to call me if he needed me. I cried the whole way to work! He was perfectly happy a couple of hours later when we spoke on the phone and had no idea I'd spent the morning crying because of what he had said...I wanted to kill him! Ironic huh?
Dom started seeing a psychologist and his Neurologist at RMH referred him to the Neuropsychiatrist as the suicidal thoughts were alarming. Dom's Keppra dose was reduced and he was started on Sodium Valporate to try to control the seizures, he also started on anti-depressants. He improved. His moods improved. He was no longer suicidal and was handling the idea of another seizure much better. He became more positive, I felt like I had gotten the old Dom back. On August 3, my first day of maternity leave, I drove Dom into Melbourne so he could work in the office, rather than from home. I treated myself to some retail therapy and enjoyed bumming round the city. I was looking froward to doing it again! That night Dom had another seizure. It lasted two minutes and he was able to call me before it began. He was on the couch when it happened, so I supported him so he wouldn't fall off, very challenging at 7 months pregnant! Called an ambulance and my mum - I have a very well established little routine now! The ambulance took Dom to the Footscray Hospital. Mum and I witness some interesting people during our little stint in the waiting room! I think my poor mum is traumatised for life! We came home a few hours later.
Again Dom was pretty shook up after the seizure, but he handled it better than I expected. After talking with each other about what scared him most with the seizures we were able to come up with a new plan to reduce the anxiety around the seizures. Dom would remain incoherent and incommunicable for approximately 30 -50 minutes after the seizures would end. In that time I would have already called and ambulance and so after each seizure the first thing Dom consciously remembered was being surrounded by strangers - the paramedics. Which would freak him out. He wouldn't know where he was, what happened, how long it had happened etc. Hence, the fear. And so we decided I would only call an ambulance if he was injured during the seizure or if it lasted more than 4 minutes. This plan was supported by the Neuropsychiatrist, Neurologist and the Psychologist.
During Dom's sessions with the Psychologist, which, in the beginning, he wouldn't go into unless I went in with him, the Psychologist was able to pick up that I was suffering Post Traumatic Stress Disorder (PTSD) from the seizures. I already knew that, but had thought if I ignored the nightmares and flashbacks I would be ok. Her concern was how that would increase the chances of me suffering Post Natal Depression after I had our baby. And so I began to see the Psychologist and started using some strategies to help with the flashbacks and nightmares, which in turn helped reduce Dom's anxiety around seizures. I had gotten so bad that I was seeing people, not just Dom, but anyone and everyone around me having a seizure from a simple movement. A lady at worked sneezed and I almost pounced on her thinking she was having a seizure. A guy in the car in front of me was brushing his hair while we were stopped at traffic lights - I saw it as him having a seizure. Dom would roll over in bed at night and I'd think it was a seizure. Very stressful way to live and not good for me, the baby or Dom! I am now much better. Still have my moments though they don't happen as often. Still, my fear is not good for me, the stress is not healthy and can increase the chances of my baby developing anxiety now or in the future. (Really need to book an appointment with the Psychologist again...will once I finish this!)
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| Daddy & Grace- only minutes old. |
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| Our little family Sept 18. |
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| Mummy looking worse for wear! |
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| First family portrait Grace 8 weeks old. |
Dom had a seizure on October 31st. It lasted 2 minutes and left me shaken. No idea why this one scared me more than the others. I just know I felt so alone when this seizure happened. Maybe it was my hormones after having a baby?
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| Daddy & Grace watching TV |
Grace's arrival in our lives was so wonderful. She gave us a new focus. We almost forgot about seizures and the anxiety and stress surrounding them. We were happy and tired, grateful and tired, in love with our little girl and did I mention tired? Being a parent is the best thing ever, tiredness included. Its been hard but wonderful. A baby has led to a lot of adjustments in our lives. We had to shift our focus from Dom to Grace. I felt like I was the mother of two children instead of one at times. I have had to learn to take a step back from hovering over Dom and he has had to start putting Grace and I before him. We have fallen into a great routine and as Grace has gotten older Dom has been able to do more things with and for Grace. At the start he struggled to pick her up because of his back, but he has persevered and is now able to bath her and everything! He absolutely adores his little girl! Nothing brightens my day more than to hear him talking to Grace and her responding chatter that only she understands. His smile when I bring Grace to him is blinding. He is no longer as fearful of seizures, he has accepted they quite possibly could be a permanent part of his future. A future he talks about, a future he plans for, a future he is looking forward to. I haven't given up hope that his seizures will be controlled with meds, but Dom doesn't like to dwell on hoping for that in case it can't happen. He just wants to be able to move forward, and if that includes the occasional seizure then so be it.
Dom now has epilepsy as a result of the stroke. He will be on warfarin for the rest of his life, along with anti-seizure meds. He will begin a new treatment for his Ulcerative Colitis in the new year. We are looking forward to the idea of having the UC under control. Doctors are still working on stabilising the epilepsy and are positive that they can get Dom seizure free. He still can't drive as he has to be seizure free for 6 months before he will be allowed to drive again. This gets him down but I just point out that he has the best looking taxi driver at his disposal :-) We are looking forward to 2016. We have set ourselves some goals and will work towards achieving them. Dom wants to go back to working in Melbourne rather than at home and he wants to be able to take the train in and out of the city to do it. While 2015 didn't go the way we would have liked it to, and it did seem a hell of a lot harder than 2014 ever was, we've survived it and have starting living again, rather than getting through each day, we are living each day.
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| Our little family bright & early on Christmas morning. |
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| Present time! |
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| We are looking forward to a happy & health 2016. |
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