Our life changing journey began at 7.20am on the morning of the 1st of June 2005. It began as just a normal day in the life of the Jukes gang. Ailey Rose (Eilish Rose), then 3 1/2 yrs old, was sitting on the washing machine next to her daddy who, every morning routinely shaved. She'd sit and watch, chatting and occasionally playing with the bubbles. This morning was no different. She was perched, chatting away and happily played with the shaving cream.
From the corner of his eye Roge (Daddy) noticed she'd slumped and almost hit her head. He propped her up again thinking she'd just wriggled and lost her balance, saying "Oh be careful you might fall". Having finished his shave he handed her a towel and asked her to wipe her hands. He noticed she took the towel in her right hand and wiped only that hand. He said "Hey what about the other one" at which time she brushed the towel over her left hand, at the time not noticing the lack of movement. With that he picked her up and popped her on the floor to walk.
He watched as she attempted to walk but simply kept falling to the left ending up leaning on the wall. By this time he began to suspect something was very wrong. He then asked her "What's wrong bubby?" And our very articulate 3 1/2 yr old thought she was talking. It was obvious she understood us, but instead of words, nonsensical mumbling came from her mouth. By now Roge knew something was seriously wrong.
He presented with her in arms, standing at the bedroom door, "There's something wrong with bubby - here look - talk to Mummy", she looked straight at me and mumbled an incoherent response. I noticed immediately the left side of her mouth was lop-sided and her eye wasn't responsive. Roge put her on the ground and said "Look, she can't walk." I noticed the entire left side of her little body just hung. I have a nursing background, but I don't work in the general hospital industry. I'd had enough experience with stroke patients to know that what I was seeing was a stroke.
I immediately knew we had to get an ambulance. I propped her on our bed and watched. Within minutes she seemed to begin to respond and was able to talk to me. Slowly the movement returned to her face, arm and leg. By the time the lovely officer Steve arrived she was running up and down the hall again. We were confused and I then decided that what I had seen was a T.I.A (Transient Ischaemic Attack)
Describing the morning's events to the wonderfully understanding ambulance officer made us feel as though we had over re-acted. There she was in front of all of us, chatting away happily and moving freely. At the end of my description and after a brief medical check-up, Steve stated that "If it had been his child he would want to know why, it had happened." This was music to my ears and my feelings of over re-acting faded and again turned to concern for our little girl.
And so began a very long journey that spanned the next 10 weeks of hospital and the last 12mths of a new "normal" for our family. Minutes seemed like hours and every minute is remembered with such clarity. During such an intensely stressful time involving something as important as your child. Details of silly things are never forgotten. Especially the sequence of events. By the time we arrived at the Royal children's hospital I realized I needed to jot myself notes of the medical staffs names, because they were coming thick and fast. We arrived around 10am and the job of the medical team to unfold pieces of information little by little and put them together to try and gain a clearer picture of the task ahead - the task being my little girl - Ailey Rose.
I realized that a medical team is like a blind person. Feeling their way without the entire picture. These people had never met me before; they didn't know me as a person or my little girl. This is the mother; they're not to know I'm not the type of person to over react. I would never exaggerate anything as serious as my child's health. Again my small amount of medical knowledge had me very certain that what I had witnessed at home was in no way seizure like. In the job I do, I see epileptic patients and have witnessed many seizures of varying presentations. Seizures were a very real possibility for the medical team.
Other options being considered were childhood migraines or a very remote and rare complication of chicken pox. Yep Ailey Rose had recovered from a bout of chicken pox 7 weeks prior to today. Another episode at 3pm that afternoon witnessed by the emergency doctor and so began the multitude of tests. ECG - to rule out electrical heart problems. Copious neurological physical examinations to try and establish evidence of residual damage from the T.I.A. (If that's what it was) nothing obvious as this stage. MRI to check her brain, the slightest of narrowing could be seen on the left side of her brain, near the middle cerebral artery, but not enough to be concerned about (we were told it could have been there since birth). An EEG to check for seizure activity (she wasn't well behaved) so the test was questionable - the slightest of slowing of the brain activity in the same area as the MRI - but no evidence of seizure activity and neither the MRI or the EEG showed any evidence of a stroke.
By this stage it was Thursday morning and one last test - a cardiac ultrasound to rule out any mechanical problems with her heart, all clear. With all the tests very inconclusive we were sent home with a blood test to obtain and 20mgs of Aspirin as a precaution (just to thin her blood a little). Couldn't get the blood test she was too dehydrated. Sent home by pathology, with instructions to feed her up, give her lots of drinks, keep her warn and bring her back tomorrow for the blood test.
It was good to be home. I didn't mind travelling the hour long drive back to Melbourne the next day - we needed the blood test. I felt confident the hospital had done all they could with what was presented to them. We gave her the aspirin and just went easily back to our life, wondering what the last few days had been about. A weekend at home - the physio had noticed she could do with some balance type exercises like putting one foot in front of the other.
My 10yrs old daughter Elora was booked in to have her tonsils out on the Monday so down I went to Sunbury, to spend the time with my middle child (who incidentally is my healthiest child). Her tonsils were rotten and should have come out many years prior. It was a day stay hospital so we came home that night on a concoction of pain stop and Panadol. It was a difficult night for our Elora, cramps and vomiting. Only in the morning Tuesday, did we realize she was allergic to codeine. With Elora finally on the right pain relief, I left her in the care of her Dad and took Ailey to her swimming lesson. She's been my water baby since birth. She had the best swim, loving every minute. Home by 1 o'clock, Roge left and I was outside watering the garden. Ailey was balancing on the bluestone wall. Great I thought she's doing her exercises. I looked down to turn the hose off and when I looked up, Ailey was on the ground again. I thought "What's she up to!"
When I got to her it was evident she was having another of her "Episodes", which they became known as. This time it was more severe. She appeared to almost be loosing consciousness. I scooped her up and attempted to get her to sing me a song she knew. She tried with only the occasional familiar word. I rang for an ambulance and held her. I also rang Roge.
Steve arrived again and it's 1.20pm by this stage. He was accompanied by Jan. I packed a bag this time, thinking I would be going back to hospital. Feeling very torn between my "sick" child Elora and Ailey Rose, who in-between episodes was fine! I went to the local hospital again. My G.P who had kept in close contact with us the entire time, had received a discharge report stating it was either childhood migraines, epilepsy, or what was now given the term of post varicella vasculitis. He felt it was most likely epilepsy, based on the results of tests and information given to his by the R.C. Hospital, and he tried to reassure me.
Although not entirely reassured we were encouraged to go home and if the episodes happened again not to make too much of a fuss. Sensing this didn't feel right the officers very firmly said to me, if I needed to call an ambulance, to do so and they would be happy to come even if they don't take her anywhere, if only for the reassurance.
These thoughtful words were very comforting. My friend took us home and my little girl ran from the hospital as happy as ever. By this stage I was very confused and upset by my over reaction, I felt foolish and as though I'd wasted precious resources and peoples time.
My sister came from Bendigo, 45min drive away to support us and take our "sick" child home to care for her, thinking I'd be in Melbourne at the hospital with Ailey Rose. Her history is in nursing and her husband is a Doctor. I felt confident they'd care for her.
I burst into tears saying it didn't feel right sending my sick child with her, so she offered to take Ailey Rose. I said yes immediately and I was hopeful she'd have an episode so that she and her hubby could give me their opinion of what they felt was going on. So Ailey Rose went home with Tone to Bendigo and I spent the night sleeping with Elora (Lorlor) ensuring she wasn't in too much pain - I was guilt ridden and worried for her.
That afternoon we also rang the hospital and left a message for the neurological registrar, informing her of Ailey's latest episode. The next morning now Wednesday (one week after the original episode) I rang the hospital to check they got our message. The Registrar rang back and said to bring her back to the hospital. I didn't have the courage to mention that she was in Bendigo. I advised that I wouldn't be able to get to the hospital until around 4pm. We had to go to the airport to collect my mother in-law who had flown from Hervey Bay Qld, to support us.
This also gave me enough time to call my sister and get Ailey back in time from Bendigo. She wasn't herself for my sister but didn't seem to have anymore episodes either (unfortunately); I'd have really valued their opinion. By 2pm we were on our way back to hospital, via the airport. This journey was filled with very different and very mixed emotions. The reality that something very serious was happening to our little girl and there was nothing anyone, including the Doctor's and modern medicine could do to stop the "process" or our life changing journey. And the overwhelming guilt at leaving my eldest daughter at a time when she too needed me most. I needed to divide myself in two. Well I was really, my body was on the way to the hospital but my head and heart were worried terribly for Lorlor. I know she'd be fine, but that "Guilt"
We arrived at 4pm just in time to see a wonderful neurologist, who immediately reviewed the previous tests and did a thorough neurological examination. The only test not performed (and I was glad at the time) was a lumbar puncture. The eurologist had found evidence of hyperflexion of her left arm, which was the first evidence of residual damage after on of her episodes. They were now known as T.I.A's (Transient Ischaemic Attacks) although the Doctor's could not rule out epilepsy.
That night at approx midnight she went into theatre for a lumbar puncture. They were looking for any evidence of infection in her CSf (possibly chicken pox virus). The poor anaesthetist looked very tired, it was the end of a very long day and I was entrusting my little girl into his care. He voiced his doubts and very cautiously informed me that there was no guarantee that he'd be able to get a sample. I understood (I hated understanding, I wish I could have stood there oblivious to what he was saying, but I knew exactly what he was saying). I also knew that a cloudy sample meant the likelihood of infection. I did not want him to say the sample was cloudy.
I sat and waited in a very quiet operating theatre recovery room, wondering how I could have possibly found my way there. After what seemed like an eternity, the Doctor emerged. He glanced over and managed to tell me he got a sample and to him it looked clear (not cloudy). I was relieved, but also knew that this didn't mean she was in the clear.
The results came back negative for active varicella virus (which they thought may have been present), but again very inconclusive, as with all the previous tests. It showed an increase in the white blood cells which was suggestive that her little body had fought an infection recently. And so began a very long trail of investigations and mystery, positive tests but not conclusive. I realized very early that I had better write myself notes if I were to keep up with the Doctor's names, investigations, blood tests, medications, the bed number and room number. By the end of our stay we will have been in every room and 9 different beds. We even stayed long enough to see some patients go home and come in again a few weeks later, yes we were becoming "long termers".
It's the little things like Suzi the ward clerk goes around to the rooms and asks if anyone needs parking ticket discounts (it means you only pay $5.00 for the day). She came around after Ailey Rose had the stroke and wrote a ticket for us. I hadn't needed one earlier. She came the next day and I said I needed another one. Surprised she asked what had happened to the one she'd given yesterday. I advised I'd thrown it away. She then informed me it was a 12 month ticket.
It was the first time in many weeks and a big realization that we were in for a long, long journey and I hadn't considered the many months (and years) ahead of us. The parking ticket incident was to be one of many realizations of our NEW reality.
The previous week we had been sent home on a small amount of aspirin yet she continued to have T.I.A's. When readmitted on the 8th June they stopped the aspirin and began a drug called clexane. It's a subcutaneous injection that goes into the skin using a device called an insulfon, and a diabetic needle. It's like a bandaid with a small plastic cannula attached. This is inserted just under the skin and the injection goes into the cannula. They were teaching me how to do it for the possibility of discharge. She was to have 2 doses per day, one in the am and one in the pm. I managed to do the dose on Thursday 9th June, in the am. Very large bruises began to form at the site. She also had another MRI on Thursday - another anaesthetic after the previous one the night before. Fasting and another EEG. A very big day and an extremely brave little girl. How can children be so resilient and forgiving? I decided that if she could be so brave then what right did I have to not be brave. None!
The difficulty at this time was mainly around the fact that in between episodes of T.I.A's she was a "normal" active 3 1/2 yr old and keeping her contained to a hospital bed was, put simply a nightmare!!! By now the sleep deprivation for all was evident.
At around 4pm the neurologist who would later become our trusty Doctor came and spoke about going home the next day. We were being discharged on the clexane (of which I would give twice a day) and we would return for a follow up appointments and reviews. As he left the room Ailey Rose said she wanted to go to the toilet.
I followed the Doctor out of the room and took her to the toilet. When I placed her on the toilet she had another major T.I.A. Wanting to go to the toilet would soon become a pre sign that a T.I.A would follow. I took her off the toilet and lay her on the floor in the corridor, (I didn't know what else to do). I called to the Doctor who was still standing in the corridor at the nurse's station. This was the first time he had witnessed an episode. For a moment she appeared not to be breathing and the MET team were called. People ran from everywhere and within seconds there was a team of professionals all ready and waiting to do what ever was needed to help my little girl.
Her T.I.A continued to present in a similar was a seizure would (but they are not seizures). This was her 4th major episode and they were getting longer and more frustrating for all. You see the Doctors and Nurses don't often see a child who comes into hospital before she's had a stroke. Most of the children have already had the stroke and thus all the tests would conclusively confirm stroke. As a result no-one could be certain that the episodes were T.I.A's no-one except me!!
She appeared to be unconscious at the time and wouldn't (couldn't) communicate. She would eventually come around, sit up and be "normal", with no or little residual paralysis. The Doctor's were still quite baffled at this point and decided to put her in a room where they could monitor her a little more closely. They didn't feel she could go to ICU because between episodes she was "normal" and active, but they also couldn't predict how often they would occur.
My problem was the other 3 children in this room were gravely ill, ventilators and tumours. She commenced IV heparin, but still the episodes continued, one of them lasting 35mins. By now I felt totally sleep deprived, I could see the episodes were increasing in quantity and duration and yet still they did not really know for certain that what they were treating was varicella (chicken pox) complication. I got upset this evening and needed to have a discussion with the neurologist about what was happening, what was likely to happen, and what they would consider doing. Again all tests inconclusive and very, very frustrating for all.
Friday the 10th June another MRI scan - nothing new - slight narrowing, but no stroke. Saturday 11th, Sunday 12th and Monday 13th, T.I.A's each day, some slight 20secs, and some longer 20mins.
Tuesday 14th June, decision to do 24hr monitoring of EEG, to determine if the episodes were seizures. She fondly became known as "spaghetti head", with the electrodes glued to her scalp. This procedure required me to stay awake for 24 hrs (getting cat naps) and press a button, when she had the episodes (so they knew where the episode occurred in the 24hr period on the tape). A long and arduous 24hrs. A recorded episode of 27mins duration was caught on tape and I breathed a sigh of relief when it happened (finally they would know). Meanwhile back at home in Kyneton, for the past week my amazing family were doing their best to continue life as normal. Almost, but not quite oblivious to what was transpiring many miles away in a hospital somewhere. Elora was recovering well, but I missed her terribly and she me. For years she would run out of school and ask to go to someone's house or they come to ours. She was now being told yes, yes, yes you can go to friend's homes, we had to accept help and fast if we were to survive this ordeal.
Many phone calls of "I love you" all around and fearful calls to my man. He would tell me later that with every call he thought it was to say she had died. How awful for Roge. I didn't have the same thoughts because I was there seeing everything and knew what was happening. This gave me some peace of mind, but he had nothing and no-one to voice these fears to. My eldest son Liam at the time 12 years old and in grade 6 coped as best he could. He hated being on the ward and we understood this. He knew he had to visit and say hi, but we'd allow him to leave ASAP. This was his way and it was ok. Wednesday 15th June - The 24hr monitoring was finally over and I was so relieved. The Doctor and EEG staff closely looked at the episodes, there were about 3-4. I was keen to know what they had to say. I had a dear friend with me when the Doctor came to talk about the monitoring. My eagerness soon turned to despair when he advised me that they could definitely say the episodes were not seizures. And they also knew she had not had a stroke. And that when ever she had these episodes she is not unconscious. That then left me with (well what?). I was then advised that they felt the episodes were "behavioural". This left me feeling just so empty and frustrated. I was devastated. I could and would not accept this explanation and challenged it vehemently
.
What I would acknowledge was that my daughter reacted in a certain way, in response to a process that was happening to her. I reiterated that she would first feel a sensation (that we would later know to be a numbing and tingling sensation of the mouth as the T.I.A. approached and she would also get the sensation in her bladder). The paralysis would then take hold and she couldn't speak or move. She did however understand and could hear what was going on around her. She would then close her eyes and thus not respond. It was her way of coping with the event of which she could do nothing about. Needless to say I was devastated and a bit of a mess. My wonderful friend attempted to comfort me, but it was a difficult moment for all. I was angry, and very frustrated. I think we all were the Doctors, Nurses, Roge, family and friends not to forget Ailey Rose.
The end result of this day was a decision to do a test that would give a lot more accurate information that the other tests previously performed could not give, but the risks were grave. The procedure was called a cerebral Angiogram. It's the same type of test performed for a cardiac procedure where the dye is put in through the femoral artery in the inner part of the leg and the x-ray is concentrated on the head instead of the heart. The problem with the procedure is the risk of stroke from the procedure itself. And the high risk of her having a stroke because they would need to stop the Heparin drip. By now the need to know that they were treating her for the right condition was paramount in our minds and the stress of not actually knowing for sure was awful.
Roge and I did a lot of soul searching at this time and were also governed by the medical staff, trusting in their professional knowledge. We agreed to go ahead with the angiogram and were promptly booked in for the procedure the next day.
Thursday 16th June. The heparin drip was ceased at 4am, the minimum amount of time before the procedure and Ailey Rose was booked in to have the procedure at 8.30am. She woke early at about 6.30am and was fasting so couldn't eat or drink. To distract her, I took her with me to the shower. I made a little bed up on a towel on the floor and asked her to sit down whilst I showered. I watched and she called to me saying "It's happening again" (which she now did when she felt an episode coming on). I told her to lie down. She did and closed her eyes. This episode lasted for approx 1 1/2mins. She sat up after and just waited until I'd finished my shower. How do children adapt so easily to their surroundings and all that happens to them? Maybe we as adults could just look and learn from them. She was happy enough. When we got back to the room about 8.15am the trolley was waiting to take her to theatre.
We were in pre-op by 8.30 and the anaesthetist and the radiographer were waiting to see her. Whilst talking to them Ailey Rose began to dry reach, which she had never done before (and remember she'd had approx 6 anaesthetics). Within seconds she started screaming and crying, saying her head hurt. She'd not ever complained of a sore head at all and did not know the word headache. She's never complained of a sore head again to date! I just knew in my heart that she was beginning to have a 'stroke'. I didn't say anything, but I knew. The radiographer doing the procedure had performed one of the previous MRI's and knew her. The anaesthetist was a colleague of my brother in-law. I believed they would do their best. I was still alone when she went in, Roge was on his way. I hoped (but didn't pray) that she would not die.
Roge arrived and I immediately told him all that had happened that morning. We sat holding hands and waited, which is all you can do. You make every effort to stay here and now and not project too far forward, but I couldn't help myself.
I had already imagined myself with a little girl who'd had a stroke the previous week. I'd seen myself dressing her and saying to myself, ?put the affected limbs into the clothing first), my first year nursing training came flooding back. I hated this aspect of my personality, my ability to prepare myself by putting myself into that situation. Don't you hate defence mechanisms! But I was soon to learn, no matter how hard you try and prepare yourself, you simply can't. Emotions are inevitable and very necessary. It's the body's way you know! Externalize at all costs, get it out or you implode. I don't know exactly how long she was gone. I think it was approx 2 1/2 hours before the radiographer came to talk to us. My immediate thoughts when I saw him were "Oh this poor man". He was visibly upset and his hands shook. He was highly professional in his approach and very human. He advised us that she had scared him and that he didn't expect to see what he had seen on the screen, based on the little girl he'd visited in pre-op. What he saw was the 'stroke' emerging in front of his eyes. But he didn't use the word 'stroke'. It wasn't for him to say. The x-ray centred on the Right side of her brain and in particular the internal carotid artery. Middle cerebral artery and the junction of the circle of Willis which is where the varicella virus is known to target. They believed this test would confirm all. Yes they were right on the one hand, it did confirm she now had a diagnosis (sort of). Post varicella vasculitis. (Vasculitis, which is simply inflammation after chicken pox).
He also advised us that she had scared him further. He had not been able to establish her blood supply or oxygen to her right leg for approx 5 mins. The vein had gone into spasm and it took a little encouragement. As a result we were required to keep a bean bag weight on the site for approx 24 hours longer than normal to ensure no further problems to the site.
Exhausted we were keen to see her and she slept soundly. But this was a much longer and deeper sleep than ever before. All the previous anaesthetics she woke quickly. The continued Neuro obs and she initially responded with some slight movement on her left side. It was quite a bit weaker, but nevertheless she had some movement in both hand, arm, leg and foot. She could talk, although chose not to. It was about 1.30pm by this stage. By 6pm the obs revealed she could no longer move her hand. The nurses and Doctors kept trying to reassure us, it may just be a temporary effect of the anaesthetic and procedure. But I knew.
At 11pm I called the nurse and asked her to get the registrar, she couldn't move her foot. He confirmed she'd lost movement in her foot and now had a full left sided hemiplegia. But again I was reassured it could be temporary. You have to have some hope, don't you? Yes even writing this piece 12mths later I'm crying.
Friday 17th June. I was woken at 3am by my little girl - Ailey Rose. She was poking me with her finger. I didn't know what she was doing and couldn't understand why she didn't call out mum, mum, I've finished my bottle - like she would normally do. Instead she poked me and handed me the bottle, not saying a word. I could see she couldn't talk and her little mouth just drooped on the left side, the milk was pooled in the corner of her mouth, and she didn't wiped it away as she would normally have done. Her eye drooped and she just looked so sad. She didn't cry, I don't think she knew how cry at this stage. What did she know?
As you write about these moments you are always right back there at that moment. I know with time it won't be as real, but I'll always remember her eyes and the bewildered look. She went back off to sleep. I got up and went to find a private place to ring Roge and tell him what had happened. It was now 3.30am Friday morning and he was already awake. I gave him the update and just sobbed the biggest sobs of my life. I had to cry, for Ailey Rose, for Roge, Liam, Elora and most of all myself. The grief I felt was overwhelming and I needed to cry. I was crying 17 days worth of tears and I'd say to date the next 12mths worth as well. Our little girl had had a stroke, she was 3 1/2 yrs of age and we would now be leaving the hospital with a child who now had a permanent disability. It was overwhelmingly real.
Jackie and Roger can be contacted, admin@strokidz.com or 03 5422 3887