Kirklan Robert Hunter

February 2023 Well well well. What a clown show this last 3 years have been. Living with a vaccine injured loved one has been especially trying through all the push to take the Covid shot. Not a lot of common sense was in order and still isn't. While advocating for Kirk's well being, we managed to get evicted from his care home. We were instructed to never give him another vaccine from the Mayo Clinic in 2001, but the recommendations of 5 pediatric neurologists was not enough for the care home's CEO who seemed to dismiss all our concerns. I was locked out for over a month during the peak crazy when they chose to ignore Kirk's palliative designation which allows for parental visits. It hit especially hard because there is no way to communicate any of this to Kirk. I just stopped showing up for a month. Unf*cknbelievable. There's too much to report so I'll just summarize. Kirk is ok, family is ok, we are grateful to be in Saskatchewan - where the crazy only dipped to defcon 2. 

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September 2019 Kirk moved into his own home in July!! Exciting and scary. We've all adjusted pretty well so far. Great staff and wonderful set up in a small home with 3 other residents and luthercare management. He still has 24/7 caregivers that followed him from mom's home, so some continuity. Still working on some extra amenities as funding becomes available (wall pads, sling, bath cushions.)

A little more work coordinating visits but trust that will work itself out - that's all for now. 

 

February 2019 Quiet year for Kirk standards. At home with mom and caregivers and we visit 3 times a week for short outtings. Added THC this last month to help through Xmas - seems to work for pain and helps sleep. Couple of ER visits in December and had a drug reaction in summer to one very effective med. Replaced and hasn't had the same energy since...needs more help walking but we're still managing. Not much to say - more of the same -yada yada yada :)

 

April 2018 A year later. Kirk was in hospital 7 months!!! A new record!! :) In July Kirk went to mom's while we tried a transition to Parkridge - a level 4 care facility in west Saskatoon. It didn't go very smoothly despite everyone's best efforts. After a week of returning seizure clusters it was decided to keep him at home and supplement care. Funding was approved for 2 years for full-time nursing care through LutherCare at mom's residence. Prayers answered - it's been the best possible outcome for everyone. Kirk has responded to new meds, mj and g-tube feeds extremely well. Although we had a rash scare last month, most days are pain and seizure-free and we get to enjoy shorter but more fulfilling visits. Looking forward to more of the same. 

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April 2017 Many meetings with district managers and directors has left us with a plan - to keep meeting until a long term care bed or home opens up. Our days are like this; mom picks Kirk up from hospital at 9am - takes him home til 5:30 when I pick him up, go for an outting then return him to hospital at 7:30 when he is met with one of many sitters that stay with him over night to begin it all again. Been doing this for a month and before that Kirk was not getting out of hospital apart from a few day passes or hour her and there. The government is deciding if the can afford to care for Kirk. They will let us know shortly - $240k a year for full time care. They should be paying us retro pay for the past 10 years we picked up their part of the expenses. Hard - but trying to be grateful. I've rented my main floor out and have found some full time work -albeit making the same wage I did in 1999 and 5 weeks fewer holidays - but hey :) at least it's something. Kirk has been doing well seizure-wise so far..so hoping that will be his new normal. Will keep you posted.

 

February 2017 WTF! November ended with us admitting Kirk to hospital with intractable seizures again this year. It appears a pharmacy error resulted in his receiving half his prescription for three weeks prior. Almost 18, Kirk was admitted into the adult side of care where things are frighteningly different. They took a heavy hand immediately by putting him under and ventilating for the first time in 17 years. They didn't even speak to mom or dad for the first day, while they assessed him. Any learned protocol in paediatrics was lost in the transition which had us at a loss. Kirk was truly left to fight this out on his own. After a very tense two weeks in ICU, we were transferred to the neurology ward where Kirk has been since. He has regained his former baseline and as a result of med changes, has managed very well this past month. He has been confined to his bed for most of the time since November while a new gtube and feeding regimen is put into play. While I managed to get a few day passes, it has been frustrating trying to keep things positive while staring a four pale green walls. Kirk is not easily entertained, as he does not watch TV, use his hands or speak. We have, for the first time, had to leave him for over nights with a sitter. That's been a huge adjustment and to be honest, I still can't leave without feeling anxious all night. Mom has decided she no longer can care for Kirk at home which has had Kirk's team scrambling to find other arrangements. While I considered taking him too, I am in the process of selling my home and have no place for him to stay for now. I've had to come to realize, we need to find a home for Kirk as well. This has meant a long and indefinite hospital stay, as most level 4 places that could care for Kirk are full. There has been some discussion regarding temporary homes but none provides one-to-one caregiving resulting in periods of restraint. Not ideal. (Actually a horrifiying thought.) They have come to the table with a self directed fund program that would see mom getting some financial help at home, enough that a nanny might provide a stop gap until a bed opens up. Needless to say, Kirk's health crisis has created a bit of a financial crisis as well. I've spent a large portion of every day in hospital which has meant work disappeared and I've run out of things to sell :) Uncertainty seems to surround us with no end in the foreseeable future. I feel blessed to have the support of some dear friends and appreciate all of you that continue to send prayers. Vivian and Lora have been a terrific help. Looking forward to sharing some positive changes in these weeks and months ahead. Thanks.

 

November 2016 Hey all. Not sure if anyone is following this anymore, but since I have a moment to write - I will. Had a tough October but managed to stay out of hospital. Kirk was moved to adult neurology in June and in the process has some new meds. The weather seems to have been an ongoing trigger for seizures and as the sun returned in November - so did a measure of control. We're tracking the activity in November against barometric pressure to see what if any correlation. We have been lowering CBD to a recommended maintenance level for Kirk's weight to see if we can realize more control. THCa has entered our radar, as some parents on our CBD facebook support site share stories of success with this product over the higher CBD 20:1 product we have been using thus far. Again no hallucinogenic side effects and can provide enhanced anti-inflammatory properties and pain relief - both we believe beneficial for Kirk. Ciao for now.

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May 2016 Serious hiccups. Kirk is in PICU after some intractable events this last week. It's very disheartening after Kirk had seemed to be progressing so well last year. We admitted him for a week in March to remove the ketogenic diet (after 13 years) and wiened off phenobarb in favour of yet another anti-convulsant. (Changes we needed to make for long term health) We also changed hemp oil supplier to Cannimed since the Charlottes Web oil we prefer, was proving to be too costly and some shipments were being stopped at customs. Only been on the Cannimed oil for a couple months so not yet sure if it is the right one. We are back with Kirk's old pediatrician in Edmonton for help managing his new hemp oil regiment. We have yet to make the trip with stability issues and forest fire smoke getting in the way. During this admission, we learned Kirk is on a very low dose of marijuana (news to us) from one of his old neurologists. Again frustrating, as no one seems forth coming with advice. Since we already spend a considerable amount for oil, we have reached out to friends and family for help for the first time. Both mom and I are unable to keep up financially without help. We are reducing his rescue loads today and praying he stays under control. Thank you for your continued prayer and support. 

 

February 2016 Charlotte's Web CBD tincture arrives! We had a hiccup introducing the new hemp oil when I selected the chocolate mint mct version and we had to go back to the old oil while we settled Kirk down again. Some close calls as he slipped back into intractable clusters during the past months misstep. We're still hoping to get him back on the Charlotte's product in the month or so ahead but now need to build up Kirk's strength. Looking at a fundraiser to help offset some of the extra expense - the weak Canadian dollar adds another $40 to the invoice. I will make an announcement in the weeks ahead if we decide to fundraise for those that wish to offer their support. Stay tuned.

 

September 2015 A year into hemp/mj and we're confident we're making progress. It's not been the remarkable turnaround aothers have seen, but Kirk continues to make cognitive progress. We still have daily seizures but both mom and I feel more comfortable with how he is handling. Lots of seizure free nights and we are removing his keto diet - slow but sure. Despite weight gain we have not increased meds - so far so good. Now looking to Charlottes Web Hemp Oil - the original source that had great success with Dravet kids. The Stanley Brothers Realm of Caring in Colorado provides more exact dosing and consistency - all very important. A little more expensive, so looking to other sources for help with the $500 monthly costs.

 

January 2015  So... I waited until now to update since September - didn't want to jeopardize the holiday by speaking too soon. While we still haven't seen obvious strides regarding the new hemp oil regimen - the proof might be in the big picture. It's been several years - thinking 6 or seven, or as many as 14 - that we have not been admitted to hospital at some point through Sept- Jan. Last year being the most infamous - all tolled - a month stay that included Christmas and New Year. This year....  (whispering) ... no hospitals :)

 

Sept 2014  OK. A little time has passed and time to weigh in on the weed. It's not had the immediate effect we'd hoped for but not as yet up to full strength. The process was fairly painless and so our hopes remain high that Kirk will benefit. We've seen some positive cognitive changes but still seizures are in his daily mix. We've had a good summer - busy with work has been an answer to prayer of sorts. Still a handful balancing all the balls in the air. All things considered we are managing well for now and looking at care homes as an option for Kirk's future residence. Blessings to all and thanks for your continued support. Thanks.s.

 

May 2014  Prayers answered - Kirk gets prescription. Stay tuned on progress :)

 

April 2014 New hope has arrived with spring. Word of the Colorado success' has spread north as well as similar news from Calgary of a young girl having 80% seizure reduction with Medicinal Marijuana. http://www.ctvnews.ca/video?playlistid=1.1758403

The how, when, where, what can we do to get it here questions now being fowarded with Kirk's physicians - can't come quick enough!!! Kirk's been getting tylenol like chiclets for some time now and we're anxious to move some mountains! God willing, we'll find some health professionals equally fearless. Otherwise happy to see spring so dress for outtings is much, MUCH easier :) Thanks for continued prayers and gifts - grateful to all! 

 

February 2014 Glad to report Kirk has had a great couple weeks. Not likely a coincidence the weather has been stable too - high pressure! Looked into Equine Therapy- requires a doctor's letter and referral for the registered program. Now thinking I'd settle for a friend's horse and a chance to watch and touch - will see. Thanks to some lovely friends and family for some kindly gifts. Also hoping to discuss a Rx for Kirk re migraines - hoping to get Med Marijuana started whatever way possible -stay tuned.

 

January 2014 Happy New Year! 

 

We are happy to see the end of 2013 and hopeful the new year brings some relief for all. Kirk was in hospital for the last week of November/first of December with uncontrolled seizures at which time we called a team pow-wow to discuss options.

 

The neurology team wants to add meds before investigation (kinda their thing). Before we increased meds we wanted to see what other things might be causing seizure increase. First simple things like teething, or migraines from barometric pressure changes, or pain from another source, or too few calories on the diet...many many things to consider.

 

The team did respond at least - resulting in an increase in meds, calories and an adenoidectomy. ENT specialist discovered his SATs were dropping in the night because of airway obstruction he believed was adenoids. We were released from hospital after 2 weeks of careful threshold rebuilding only to be called in to surgery Friday, December 13th (The anniversary of Kirk's injury 14 years prior) We got prepped and into pre-op only to be told the hospital was full so rescheduled. We were all really nervous so didn't mind the delay but then were told a few days later he was slated for Friday, December 20th :P We enjoyed a skidoo ride in between when the temps kindly rose to zero.

 

The surgery went reasonably well, but discovered Kirk had a deviated septum compliments of a drop seizure into the bathroom countertop at age 3 - so another surgery lies ahead to correct that. After surgery, Kirk cried hard for an hour :( He could only have minimal pain management because of his no carb Keto diet. 

 

He seemed to be ok for a few days after and had 100% SAT results both nights and through Xmas day at home. Kirk and I got an ambulance ride in ER December 29 at 4am with uncontrolled seizures again after 2 great nights! (Starting to believe it is related to weather pressure changes - explains the trouble throughout these months every year. Last few years we've had extended hospital stays and of course that means staying over with Kirk every night - not the best sleeping in a cot up most of the night for weeks.)

 

We left the ER after 5 hours of listening to the triage team rightfully turn their complete and undivided attention to a profanity yelling man in the adjoining room, with multiple stab wounds. We went home and I tried to console Kirk as he cried heavy for hours - Kirk was re-admitted to hospital.

 

Since Last year I managed to have a fun New Years for the first time in 15 years, Kirk and I greeted the New Year with the nurses that drew the short straws. In these days after New years we've seen another couple episodes of bad nights with uncontrolled seizures - even with 4 ativan and tylenol added to his existing diet and 2 maintenance meds to try to interupt with no luck. He has been having good moments and really nasty ones. 

 

Anyways, we continue to try to be positive :) Grateful to receive a couple monetary gifts from some very kind people - some of whom I know can't afford it themselves and have significant problems of their own to deal with - thank you all for generous gifts of prayer too. I'll try to keep you posted.