Molly's Recovery
Donation protected
In October 2015 I heard the dogs barking at someone in the driveway. I looked outside and my heart dropped. It was the police. As a parent, your worst fear in this situation is that one of your kids is hurt – and that's what it was. They told me that my daughter Molly was in the children's hospital in serious condition. When my wife and I met at the hospital, we were told that Molly was found in a bathroom at school with a shoelace around her neck, not breathing for an unknown amount of time. She had severe brain damage from a lack of oxygen.
The hospital put Molly into an induced coma to give her brain a chance to recover from initial swelling. Sometime over the next two days she was given a set of pain-response tests to see how bad the damage was. Molly showed no response whatsoever. We were sat down in a room and given some kind of 'bad news' speech. And it was the worst news. However, the doctors still wanted to do an MRI for whatever reason they didn't really make clear.
After a night that we don't want to repeat, we found out that the damage was not nearly as extensive as they thought based on the MRI. It turns out the paralyzing drug takes longer to wear off than a hospital-full of experts was aware of.
From that point the plan to treat Molly included waiting for her to get better on her own, and to medicate any symptoms that arose. Over the following weeks, these mostly included repeating muscle spasms in her arms, leg and during more intense periods, neck. She also had a number of infections, presumably just from being in the hospital.
At around six weeks, we met with the team treating Molly. I remember waiting to hear from someone what the plan to at least attempt to treat Molly would be. There was no plan. We were told that based on her 3 month progress (at 6 weeks) she had not recovered enough to indicate that she would recover at all. At this point Molly still could not communicate or show controlled movement. There was lots of talk about which drugs to use for her symptoms.
Molly's mom and I could not, and still won't leave her alone (we switch off) for more than an hour or so. In three months, her and I have witnessed many signs of cognitive behaviour. Her eyes would point directly at faces she was familiar with (not randomly), she's made vocal noises on request, stuck out her tongue on request, and recently picked out colored shapes on request four times in a row by looking directly at the requested shape with her one open eye. These things only happen in the brief periods when Molly is relaxed, not spasming and not showing signs of extreme pain. Not often enough for the neurologists to see on their short visits.
Unfortunately, if a neurologist doesn't see a tree fall in the forest, it didn't happen. So, at three months, Molly has been diagnosed as being in a Persistent Vegetative State. Essentially this means that if she can't say that she's aware and cognitive, she isn't.
About two months ago, Molly was given additional meds to prevent seizures and treat the spasms (or stiffness of her muscles). From that day, her resting heart rate jumped from the low 70's to low 80's and kept going up daily to high 90's. It was a painful time to witness. With periods of sustained escalated heart rates came more intense and frequent spasms, full expressions of pain at many levels, and fevers following the escalations. After about a month, it was decided to wean her off the new drug over the course of about 6 weeks. She responded right away at every reduction. She had lower resting heart rates, fewer and less sustained escalations, less pain, open eyes, looking at us, vocalization, both on request and at times when she is uncomfortable.
But the diagnosis remains the same and we won't accept it. Fortunately, there are experts who are willing and capable of treating Molly – to what end we can't promise, but absolutely willing to try. The principals of brain plasticity have been in use for decades (not long enough to turn around the Canadian health care system), but widely established and widely successful. The best overview of these principals is in the books of Dr. Norman Doidge featured twice by David Suzuki on the Nature of Things.
As Molly's condition deteriorates daily from lack of stimulus, cancelled physiotherapy, and extreme medication, her Mom and I are struggling to get her into a long term care facility, so she can be much more comfortable, closer to home, and receptive to treatment.
The challenge comes financially. The specialists will cost us directly and equipment like special splints, transportation, wheelchair and more are also very costly. We have lost one of two family incomes and the family is under pressure to function in every way. With either one parent always away at the hospital at any given time, life is a troubled state for everyone including Molly's two brothers.
Many family and friends have expressed the desire to help. Helping with the financial burden of treatment is one of the best ways there is. The gratitude of Molly's mother and I is immeasurable.
Molly, we will not give up on you.
About Molly
Molly is a tough and sensitive 16 year old who loves anime, has been folk dancing for 12 years, and believes that gender identification is a choice. She's colored her hair more times than there are colors. At 4 she started dancing with the Hungarian Kapistran Folk ensemble, which includes an intense week of 21 performances during Folklorama every year. Molly spent several years with the RWB ballet school and got to perform as one of the children in the Nutcracker with the Royal Winnipeg Ballet. She loves all kinds of music and plays flute in her school band. Some of the pictures you see here are from a trip to the Dominican Republic with her Mom and other friends and family. Molly is also a great artist.
Thank you
To the schools in our community, the teachers, administrators, families and students... To our close friends, endearing family and to Molly's devoted friends, we thank you for all that you have done to help us through this storm. It's not over yet, and we maintain unfaltering hope and faith in Molly's recovery while working tirelessly to bring her back.
The hospital put Molly into an induced coma to give her brain a chance to recover from initial swelling. Sometime over the next two days she was given a set of pain-response tests to see how bad the damage was. Molly showed no response whatsoever. We were sat down in a room and given some kind of 'bad news' speech. And it was the worst news. However, the doctors still wanted to do an MRI for whatever reason they didn't really make clear.
After a night that we don't want to repeat, we found out that the damage was not nearly as extensive as they thought based on the MRI. It turns out the paralyzing drug takes longer to wear off than a hospital-full of experts was aware of.
From that point the plan to treat Molly included waiting for her to get better on her own, and to medicate any symptoms that arose. Over the following weeks, these mostly included repeating muscle spasms in her arms, leg and during more intense periods, neck. She also had a number of infections, presumably just from being in the hospital.
At around six weeks, we met with the team treating Molly. I remember waiting to hear from someone what the plan to at least attempt to treat Molly would be. There was no plan. We were told that based on her 3 month progress (at 6 weeks) she had not recovered enough to indicate that she would recover at all. At this point Molly still could not communicate or show controlled movement. There was lots of talk about which drugs to use for her symptoms.
Molly's mom and I could not, and still won't leave her alone (we switch off) for more than an hour or so. In three months, her and I have witnessed many signs of cognitive behaviour. Her eyes would point directly at faces she was familiar with (not randomly), she's made vocal noises on request, stuck out her tongue on request, and recently picked out colored shapes on request four times in a row by looking directly at the requested shape with her one open eye. These things only happen in the brief periods when Molly is relaxed, not spasming and not showing signs of extreme pain. Not often enough for the neurologists to see on their short visits.
Unfortunately, if a neurologist doesn't see a tree fall in the forest, it didn't happen. So, at three months, Molly has been diagnosed as being in a Persistent Vegetative State. Essentially this means that if she can't say that she's aware and cognitive, she isn't.
About two months ago, Molly was given additional meds to prevent seizures and treat the spasms (or stiffness of her muscles). From that day, her resting heart rate jumped from the low 70's to low 80's and kept going up daily to high 90's. It was a painful time to witness. With periods of sustained escalated heart rates came more intense and frequent spasms, full expressions of pain at many levels, and fevers following the escalations. After about a month, it was decided to wean her off the new drug over the course of about 6 weeks. She responded right away at every reduction. She had lower resting heart rates, fewer and less sustained escalations, less pain, open eyes, looking at us, vocalization, both on request and at times when she is uncomfortable.
But the diagnosis remains the same and we won't accept it. Fortunately, there are experts who are willing and capable of treating Molly – to what end we can't promise, but absolutely willing to try. The principals of brain plasticity have been in use for decades (not long enough to turn around the Canadian health care system), but widely established and widely successful. The best overview of these principals is in the books of Dr. Norman Doidge featured twice by David Suzuki on the Nature of Things.
As Molly's condition deteriorates daily from lack of stimulus, cancelled physiotherapy, and extreme medication, her Mom and I are struggling to get her into a long term care facility, so she can be much more comfortable, closer to home, and receptive to treatment.
The challenge comes financially. The specialists will cost us directly and equipment like special splints, transportation, wheelchair and more are also very costly. We have lost one of two family incomes and the family is under pressure to function in every way. With either one parent always away at the hospital at any given time, life is a troubled state for everyone including Molly's two brothers.
Many family and friends have expressed the desire to help. Helping with the financial burden of treatment is one of the best ways there is. The gratitude of Molly's mother and I is immeasurable.
Molly, we will not give up on you.
About Molly
Molly is a tough and sensitive 16 year old who loves anime, has been folk dancing for 12 years, and believes that gender identification is a choice. She's colored her hair more times than there are colors. At 4 she started dancing with the Hungarian Kapistran Folk ensemble, which includes an intense week of 21 performances during Folklorama every year. Molly spent several years with the RWB ballet school and got to perform as one of the children in the Nutcracker with the Royal Winnipeg Ballet. She loves all kinds of music and plays flute in her school band. Some of the pictures you see here are from a trip to the Dominican Republic with her Mom and other friends and family. Molly is also a great artist.
Thank you
To the schools in our community, the teachers, administrators, families and students... To our close friends, endearing family and to Molly's devoted friends, we thank you for all that you have done to help us through this storm. It's not over yet, and we maintain unfaltering hope and faith in Molly's recovery while working tirelessly to bring her back.
Organizer
Marian Jozsa-Gauvin
Organizer
Winnipeg, MB
