Journal entry by Mike Hastings —
Greetings to any and all who are still out there checking in. This will be our final caring bridge post and we want to start by once again thanking all of you for your love, concern, prayers, and support.
Camryn's last day on steroids she was taking to help keep swelling down was last Monday. She had a longer headache than her normal daily morning one on Wednesday, however we atribite that to high anxiety about an appoinent with the neuro resident on Wednesday: despite the headache, everything cecked out good.
Oh, and once again they made it clear we will never know why it happened. :/. They CAN say her experience mirrors 100's of other pediatric cases and in THOSE cases, it is a one time thing....
Camryn continues with outpatient therapy Mary Free Bed twice a week - largely focusing on memory and multitasking - the plan is to continue 2 weekly visits through July and then likely reduce to 1 per week after that. She has not been cleared to drive and is slowly becoming more active, always having to be mindful of overdoing it; dizzy spells head pain and blurry vision are less common but still present.
Her biggest struggle right now continues to be what we are calling "confabulation". We borrowed the term from Grandpa Hastings' experiences with dimentia early on and it fits: with longer term memory she gets things scrambled up in her memory in such a way that the memory is loosely rooted in something that actually happened, but details are goofy and sometimes outright wrong. From a short term standpoint it affects her regularly and she thinks she remembers something that she either meant to say/do or didn't (easily confused with normal teenage forgetfulness), or thought she said or did but didnt. And expecially with directions or instructions - which she cannot recall if more lengthy than 2 or 3 steps unless an intentional effort was put in to intense repetition when they were being given.
We have not heard this from a doctor, but from family experience with my mom and Colleen's mom with a head injury and stroke, I am beginning to wonder if much of this year will ultimately be fuzzy or even lost for her long term - with "normal" memory and recal being illusive maybe until her recovery is complete in winter.
Regardless - keep this is mind when you talk to her. She is getting used to stating "I'm not sure if this happened or is confabulation...." But is struggling through the desire to be back to normal and also doesn't want to call attention to the event and wants to be "a normal 18 year old" so often she is saying something with compete confidence that may not be accurate.
As of right now, her plans to attend CC in the fall to get her basic photography and business classes out of the way are still a thing - what that will look like we don't know. Her therapist at MFB has offered to reach out to the college and discuss/implement accomodations, and there is no rule saying she has to start with a fulload or even part time load, so we are keeping all options open.
We have a follow up on Wednesday with the neurosurgeons office. We consider it a good sign that an MRI we originally understood to be scheduled for this week has been pushed back to November. We aren't doctors, but suspect that wouldn't have happened if they felt a reason to be concerned. We always anxiously await these appointments, but also try to stay realistic and expect we will hear more of the same 'company line' about never knowing why it happened and she is recovering well. Considering where we were 2 months ago we will take it. We will be asking about driving at that appointment - dont have any indication when that restriction will be lifted, but when it is that will allow her to return to a limited work schedule when she is up to it, and also help the fall college be more manageable.
And so the ongoing recovery is part of our new normal. Thanks to all who came to her open house - the number who attended was overwhelming and heartwarming. We continue to get out and engage in some family activities and vacations and will continue to do so as the summer and COVID allow.
Here's to you; our constant supporters and readers. Writing this has been therapeutic for us and we appreciate you more than we can ever say, and we could not have made it through this ordeal without you and your thoughts and prayers and small but meaningful acts of kindness. We will leave you with our new family motto:
When life has you frustrated, angry, upset, or otherwise disgruntled, just ask yourself "was it brain surgery?" - Camryn made it through brain surgery, so she can make it through anything - so can you.
#CAMRYNSTRONG
Camryn's last day on steroids she was taking to help keep swelling down was last Monday. She had a longer headache than her normal daily morning one on Wednesday, however we atribite that to high anxiety about an appoinent with the neuro resident on Wednesday: despite the headache, everything cecked out good.
Oh, and once again they made it clear we will never know why it happened. :/. They CAN say her experience mirrors 100's of other pediatric cases and in THOSE cases, it is a one time thing....
Camryn continues with outpatient therapy Mary Free Bed twice a week - largely focusing on memory and multitasking - the plan is to continue 2 weekly visits through July and then likely reduce to 1 per week after that. She has not been cleared to drive and is slowly becoming more active, always having to be mindful of overdoing it; dizzy spells head pain and blurry vision are less common but still present.
Her biggest struggle right now continues to be what we are calling "confabulation". We borrowed the term from Grandpa Hastings' experiences with dimentia early on and it fits: with longer term memory she gets things scrambled up in her memory in such a way that the memory is loosely rooted in something that actually happened, but details are goofy and sometimes outright wrong. From a short term standpoint it affects her regularly and she thinks she remembers something that she either meant to say/do or didn't (easily confused with normal teenage forgetfulness), or thought she said or did but didnt. And expecially with directions or instructions - which she cannot recall if more lengthy than 2 or 3 steps unless an intentional effort was put in to intense repetition when they were being given.
We have not heard this from a doctor, but from family experience with my mom and Colleen's mom with a head injury and stroke, I am beginning to wonder if much of this year will ultimately be fuzzy or even lost for her long term - with "normal" memory and recal being illusive maybe until her recovery is complete in winter.
Regardless - keep this is mind when you talk to her. She is getting used to stating "I'm not sure if this happened or is confabulation...." But is struggling through the desire to be back to normal and also doesn't want to call attention to the event and wants to be "a normal 18 year old" so often she is saying something with compete confidence that may not be accurate.
As of right now, her plans to attend CC in the fall to get her basic photography and business classes out of the way are still a thing - what that will look like we don't know. Her therapist at MFB has offered to reach out to the college and discuss/implement accomodations, and there is no rule saying she has to start with a fulload or even part time load, so we are keeping all options open.
We have a follow up on Wednesday with the neurosurgeons office. We consider it a good sign that an MRI we originally understood to be scheduled for this week has been pushed back to November. We aren't doctors, but suspect that wouldn't have happened if they felt a reason to be concerned. We always anxiously await these appointments, but also try to stay realistic and expect we will hear more of the same 'company line' about never knowing why it happened and she is recovering well. Considering where we were 2 months ago we will take it. We will be asking about driving at that appointment - dont have any indication when that restriction will be lifted, but when it is that will allow her to return to a limited work schedule when she is up to it, and also help the fall college be more manageable.
And so the ongoing recovery is part of our new normal. Thanks to all who came to her open house - the number who attended was overwhelming and heartwarming. We continue to get out and engage in some family activities and vacations and will continue to do so as the summer and COVID allow.
Here's to you; our constant supporters and readers. Writing this has been therapeutic for us and we appreciate you more than we can ever say, and we could not have made it through this ordeal without you and your thoughts and prayers and small but meaningful acts of kindness. We will leave you with our new family motto:
When life has you frustrated, angry, upset, or otherwise disgruntled, just ask yourself "was it brain surgery?" - Camryn made it through brain surgery, so she can make it through anything - so can you.
#CAMRYNSTRONG
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