The end of Hell Week
In support of
The Burkett Family
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The Burkett Family
(Update Transfer from Caringbridge)
End of Hell Week. For now. June 15, 2024
June 15, 2024 You would never know what happened.
Braven's pain is low to no, his hospital bracelets are off and he's bouncing off the walls in post pain euphoria.
His hands are bruised from IV cocktails and infusion lines, but he smells fresh from the bath he just took to help his cramping muscles relax as they come back to full capacity.
The drooling has stopped, his words are intelligible again, and he's noticing his need to use the bathroom again.
The right sided weakness is almost gone, he's using both arms equally, there isn't really a limp today, just bandaids covering bloody knees from his fall last night when his right leg gave out suddenly.
If we can hold this position till tonight, we can consider this attack broken.
Another may start tomorrow. But it won't be part of this Intractable one. It will be its own journey with its own story and timeline.
David and I are sleepwalking and both feeling ill from a week of only hours here and there traded off of sleep. Of dozing as a family piled onto one Emergency Department stretchers. Driving home at 2am, 4am, 5am, 12am...
The house is a disaster. We've got both the dogs home now. They need a walk.
Apparently it's Father's Day weekend.
Braven is asking to go back to preschool to see his "besties". We haven't figured out how to tell him the school unceremoniously dismissed him this week. He didn't even go long enough for me to get the numbers of his "besties" for play times.
I was counting on that support to get through the summer. I had to send a letter of resignation to a part time commitment I had made for the summer, while at the hospital.
The caretaker fatigue has gotten intense this last few months. Depression is heavy for me. Anxiety is biting at David. We need qualified childcare. We need a date. We need a breath.
So many have asked how they can support. It's been hard to know how to respond, mostly because this feels so normal and it's been hard to think over our writhing, screaming toddler, but here are some things we know:
- This Diagnosis isn't going anywhere. Braven is a Traumatic Brain Injury Survivor with long term disability in the form of Hemiplegic Migraine. It is hard to see when we are in public because HM resolves and then strikes again, but it is rare and horrific and isolating, especially since it's hard to "see".
- Braven is coming out of this with a lot of medical trauma, is expressing lots of worry about his head "getting a hole in it", calls hospitals "nightmares", when asked where he lives says "the hospital" and trys to make owies better "so doctors dont cut our clothes and shoes off". He has a lot of therapeutic processing to do. And so do we.
- We have lost the summer support of his preschool and are back to holding all of Braven's needs ourselves 24/7. We cannot attend therapy ourselves without qualified childcare, as Braven is too attuned to what we are saying. And we are exhausted.
- Trauma therapy for Braven and for ourselves is not covered by our insurance. Neither are Braven's daily compounded medications.
- We still do not know what kind of episode Braven suffered Thursday morning. What the doctors do know is, like myself, Braven is at higher risk for serious complications, more severe symptoms and hospitalizations during flairs and attacks if he gets something like a cold or flu or COVID etc. So our serious need for those around us to be healthy is yet again UNDERSCORED and not something we just got to leave in 2020 like so many others.
While it looks like we have financial assistance from the hospitals for this week's trips 🤞we would love to get some medical play items for Braven in our home, not just at therapy to help him gain some control back and also empower him to process the tools that come with his rare disorder.
He will have many more hospital trips, Seattle Children's Admissions and specialty tests and appointments in his childhood, so we understand now it's time to set up for long haul emotional support and empwerment for a complex medical childhood.
Whenever we have to travel to Seattle Children's Hospital, its 4 hours on the road, gas, food, lodging if emergency overnight, and typically means needing dog boarding or Rover care, so those expenses are also on repeat in our home.
We are needing to find a qualified nanny who can support a child with complex medical condition, since we no longer have a school or daycare option. Otherwise we are going to hit burnout very very soon.
And finally, assistance with house cleaning is a large need. With Braven being chronically in a state of Migraine 2-3 days out of the week, needing special monitoring, and myself being disabled and out of commission several days a week with my own brain injury, David and I are constantly struggling to keep our home a clean and nurturing space. Add in ER runs and hospital stays, the packing and unpacking of hospital bags and baskets on an almost daily occurance, it's just too much right now.
Thank you for witnessing us.
Thank you for witnessing us.
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