Freya in the Whitsunday's last year
Tuesday, August 31, 2010
The Morning After
Freya is resting comfortably after yesterday’s surgery. She has woken briefly, taken a drink of water and asked whether she had her surgery yet. She will not wake fully for a couple of days. As expected at this early stage, Freya has no feeling or movement in her left arm, hand and leg. The gargantuan task of her rehabilitation will commence next week.
Surgery Day
Freya's neurosurgery is now complete. She was wheeled into surgery after she was anaesthetised for an MRI scan at 8.00am. Due to the constant seizure twitch in her left ankle and leg it was important that the scans be done while she was under anaesthetic to ensure the scans were not distorted by any movement (seizures activity stops under GA). At 8.00pm, almost 12 hours after the commencement of surgery, Wirginia Maixner saw us to report that the surgery had gone very smoothly with no complications.
Freya returned to her hospital room at around 9.30pm and is still unconscious. The nurses will attempt to rouse her every half hour and she will probably have a CT scan in the middle of the night to check for blood clots. Anthony is doing the night shift, so not much sleep for him!
Despite being very pale and her face beginning to swell, both Anthony and I think Freya looks serenely beautiful. It is the first time in 3 years that her body has been still without the constant twitching in her left leg.
It is almost unfathomable to believe that the daily seizures that she has lived with for almost half her life are now over.
Freya returned to her hospital room at around 9.30pm and is still unconscious. The nurses will attempt to rouse her every half hour and she will probably have a CT scan in the middle of the night to check for blood clots. Anthony is doing the night shift, so not much sleep for him!
Despite being very pale and her face beginning to swell, both Anthony and I think Freya looks serenely beautiful. It is the first time in 3 years that her body has been still without the constant twitching in her left leg.
It is almost unfathomable to believe that the daily seizures that she has lived with for almost half her life are now over.
Monday, August 30, 2010
A long day before the longest of days
Today was a full day of appointments at the RCH. We met with many of the surgical team who will be involved in Freya's surgery tomorrow. The surgery is being conducted by Wirginia Maixner, of the the co-joined twins fame. If she can successfully separate 2 toddlers with fused brains, we know Freya is in safe hands. As Wirginia explained to Freya when she tentatively asked about the danger of the surgery and the risk of the "d" word (which she cannot bear to name) Wirgina replied, "Freya, you are more at risk climbing the stairs or crossing the road than you are having this surgery. I am very, very good". Just what Anthony and I needed to hear from our surgeon, total confidence - forget about the modesty!
I hope the team all get a good nights rest because it will be a long surgery. Wirginia is a slow and cautious surgeon and the surgery will be at least 12 hours, but possibly up to 14. Due to the length of the surgery Freya will require blood transfusions through a central line in the artery in her neck. After the surgery she will be either transferred to the ICU for a couple of days, or if she is stable enough straight to the High Dependency Unit in the Neurology ward. I will post as soon as news is available.
Thank you to everyone who has called, emailed and texted messages of support today, and especially the children of Grade 5/6S at Fairfield Primary who made Freya the happiest we have seen her in weeks with the handmade cards, puzzles, games and the beautifully crafted pillow. Thank you Miss Sear for bringing the gifts into the hospital and cheering Freya up so fabulously before her difficult day.
I hope the team all get a good nights rest because it will be a long surgery. Wirginia is a slow and cautious surgeon and the surgery will be at least 12 hours, but possibly up to 14. Due to the length of the surgery Freya will require blood transfusions through a central line in the artery in her neck. After the surgery she will be either transferred to the ICU for a couple of days, or if she is stable enough straight to the High Dependency Unit in the Neurology ward. I will post as soon as news is available.
Thank you to everyone who has called, emailed and texted messages of support today, and especially the children of Grade 5/6S at Fairfield Primary who made Freya the happiest we have seen her in weeks with the handmade cards, puzzles, games and the beautifully crafted pillow. Thank you Miss Sear for bringing the gifts into the hospital and cheering Freya up so fabulously before her difficult day.
Friday, August 27, 2010
The Long Road
In 2 days time Freya will undergo life-changing surgery that cure of her of the chronic encephalitis she has suffered for the past five years. The radical surgery known as a “hemisperectomy” is disconnection of one hemisphere of the brain, and is currently the only known cure to halt the inflammatory process of the encephalitis and stop the relentless seizures caused by both theinflammation and subsequent scarring that occurs in the brain.
Chronic Encephalits or Rasmussen’s Encephalitis (RE - as it is more commonly known) is an exceptionally rare disease that effects about 1 in 500,000 children. The reason for the disease is unknown but there is fairly strong evidence to suggest it is an autoimmune disease, probably triggered by a viral infection. Like all autoimmune disease, the body continues to produce antibodies long after the culprit antigen has gone. For children like Freya, most of who are under 10 when they contract this disease (the average age is 6 and Freya was 6 years and one month), the results of this inflammatory process are uncontrolled seizures, weakness on one side of the body and cognitive decline. For another unknown reason, RE only affects one hemisphere of the brain. For some children, the damage can happen rapidly over a few months, or others like Freya the disease can bubble along for years, going quiet for periods, then causing severe seizure activity and new areas of inflammation and atrophy. The seizures originate from wherever in the brain the disease is active, or where the disease has left scarring or atrophy. Most RE children end up having a variety of seizure types over the course of the disease.
A particularly miserable winter.
About 7 weeks ago, the disease flared again, this time violently. Freya was admitted to the RCH with a new, particularly horrible seizure type coming from the area of her brain that creates fear and visual/auditory hallucinations. Sitting at her bedside, recording the seizure activity for the doctors, I think we counted over 200 on one day. From this time, we knew there was no going back, it was very obvious that the treatments she has been receiving at the RCH over the last few years were no longer holding the disease - surgery was the now inevitable and from our point of view, urgent.
Freya will undergo a Functional Hemispherectomy on Tuesday 31 August, which means the right side of her brain will be disconnected from the left hemisphere and her right hemisphere will no longer function. If there has been any fortune at all in getting such a horrible disease, it is that the disease has attacked her non-dominant hemisphere, meaning her language and memory will not be affected by the surgery. The most obvious immediate deficits she will suffer will be paralysis on the left side of her body. Her leg, arm and hand will initially have no movement. It is expected with intense physio and occupational therapy Freya will regain pretty good function in her left leg (and be able to walk, skip and run), a bit of function in her left arm, but her left hand will no longer be very useful, and fine finger movements impossible. Cognitively, many of the functions in the right hemisphere are visual-spatial, so just like me, she will be a little “challenged” by higher maths and directions. Amazingly, children who have this surgery do not have any change to their personalities, and their intellectualy functioning improves because they do not need to take buckets of anti-epileptic medication, and the "good" hemisphere can work a whole lot better, without being impacted by constant seizures arising from it's diseased other half.
About one week after Freya's surgery, she will be transferred to the care of the RCH Pediatric Rehabilitation Team who will commence the intense physical therapy. The rehab team have been fantastic, and very optimistic about how Freya will recover from the surgery.
We are also very grateful to the advice we have received from RE specialists around the world. At times I have been overwhelmed by the kindness and concern expressed for a little girl from Melbourne, Australia these doctors have never met.
Chronic Encephalits or Rasmussen’s Encephalitis (RE - as it is more commonly known) is an exceptionally rare disease that effects about 1 in 500,000 children. The reason for the disease is unknown but there is fairly strong evidence to suggest it is an autoimmune disease, probably triggered by a viral infection. Like all autoimmune disease, the body continues to produce antibodies long after the culprit antigen has gone. For children like Freya, most of who are under 10 when they contract this disease (the average age is 6 and Freya was 6 years and one month), the results of this inflammatory process are uncontrolled seizures, weakness on one side of the body and cognitive decline. For another unknown reason, RE only affects one hemisphere of the brain. For some children, the damage can happen rapidly over a few months, or others like Freya the disease can bubble along for years, going quiet for periods, then causing severe seizure activity and new areas of inflammation and atrophy. The seizures originate from wherever in the brain the disease is active, or where the disease has left scarring or atrophy. Most RE children end up having a variety of seizure types over the course of the disease.
A particularly miserable winter.
About 7 weeks ago, the disease flared again, this time violently. Freya was admitted to the RCH with a new, particularly horrible seizure type coming from the area of her brain that creates fear and visual/auditory hallucinations. Sitting at her bedside, recording the seizure activity for the doctors, I think we counted over 200 on one day. From this time, we knew there was no going back, it was very obvious that the treatments she has been receiving at the RCH over the last few years were no longer holding the disease - surgery was the now inevitable and from our point of view, urgent.
Freya will undergo a Functional Hemispherectomy on Tuesday 31 August, which means the right side of her brain will be disconnected from the left hemisphere and her right hemisphere will no longer function. If there has been any fortune at all in getting such a horrible disease, it is that the disease has attacked her non-dominant hemisphere, meaning her language and memory will not be affected by the surgery. The most obvious immediate deficits she will suffer will be paralysis on the left side of her body. Her leg, arm and hand will initially have no movement. It is expected with intense physio and occupational therapy Freya will regain pretty good function in her left leg (and be able to walk, skip and run), a bit of function in her left arm, but her left hand will no longer be very useful, and fine finger movements impossible. Cognitively, many of the functions in the right hemisphere are visual-spatial, so just like me, she will be a little “challenged” by higher maths and directions. Amazingly, children who have this surgery do not have any change to their personalities, and their intellectualy functioning improves because they do not need to take buckets of anti-epileptic medication, and the "good" hemisphere can work a whole lot better, without being impacted by constant seizures arising from it's diseased other half.
About one week after Freya's surgery, she will be transferred to the care of the RCH Pediatric Rehabilitation Team who will commence the intense physical therapy. The rehab team have been fantastic, and very optimistic about how Freya will recover from the surgery.
We are also very grateful to the advice we have received from RE specialists around the world. At times I have been overwhelmed by the kindness and concern expressed for a little girl from Melbourne, Australia these doctors have never met.
Subscribe to:
Posts (Atom)