MAMA, when am I going to die?
In support of
The Burkett Family
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The Burkett Family
Our little guy has hit another roadblock in Moderate Traumatic Brain Injury land and his neuro symptoms started to escalate the start of this month.
None of our medications worked to stop the attack, he would almost return to baseline and then crash down again. Pain, confusion, falling, drastic communication drops, increased anxiety and panic, and increased swallow challenges.
We are used to regularly needing to help support him/change position etc daily choking on food and spit. It makes driving stressful, sleep stressful, and eating stressful. We have to be ready to perform rescue measures and CPR at any time. We carry a LifeVac everywhere. We have to change him after he pukes in the car choking on his own spit while singing on the way to Costco.
His disphagia (swallow challenges) which he's had since birth, gets worse when his neuro symptoms are flairing and it got bad enough this month that we almost lost him to severe choking with full obstruction a few weeks ago..
He has been out of school almost 4 weeks now, until safety measures can be upped with the district due to his medical fragility. His little world is upside down and it's scary and dark for him. So dark. He's asking terrifying questions like, "when am I going going to die?" And "when my eyes fall out is there a doctor who can give me a new one?"
I (Elle) am shot. My body and brain are not holding up great to the stress levels of resuscitating my child, holding space for his trauma responses, dark questioning, screaming panics and advocating for his safety and deepening care and education constantly with the school and his large team of providers.
This last weekend I had a severe stressed induced Hemiplegic episode, and Braven caught a cold and it quickly became apparent that he was in too much danger of aspiration pneumonia or other complications just from the basic cold (unable to clear nasal drip or cough fluid, he ends up choking and gagging till he throws up on repeate).
So Monday we took him to our local hospital for stabilization and transfer to Seattle Children's where his team could admit him and monitor him appropriately.
We have gathered more tools, supports and answers regarding caring for our amazing guy and he had a very informative Swallow Study today that made me feel SO much less crazy.
Still trying to achieve his baseline neuro levels (pain, communication, behavior, gross and fine motor) and a night without choking so much he pukes in his sleep.
None of our medications worked to stop the attack, he would almost return to baseline and then crash down again. Pain, confusion, falling, drastic communication drops, increased anxiety and panic, and increased swallow challenges.
We are used to regularly needing to help support him/change position etc daily choking on food and spit. It makes driving stressful, sleep stressful, and eating stressful. We have to be ready to perform rescue measures and CPR at any time. We carry a LifeVac everywhere. We have to change him after he pukes in the car choking on his own spit while singing on the way to Costco.
His disphagia (swallow challenges) which he's had since birth, gets worse when his neuro symptoms are flairing and it got bad enough this month that we almost lost him to severe choking with full obstruction a few weeks ago..
He has been out of school almost 4 weeks now, until safety measures can be upped with the district due to his medical fragility. His little world is upside down and it's scary and dark for him. So dark. He's asking terrifying questions like, "when am I going going to die?" And "when my eyes fall out is there a doctor who can give me a new one?"
I (Elle) am shot. My body and brain are not holding up great to the stress levels of resuscitating my child, holding space for his trauma responses, dark questioning, screaming panics and advocating for his safety and deepening care and education constantly with the school and his large team of providers.
This last weekend I had a severe stressed induced Hemiplegic episode, and Braven caught a cold and it quickly became apparent that he was in too much danger of aspiration pneumonia or other complications just from the basic cold (unable to clear nasal drip or cough fluid, he ends up choking and gagging till he throws up on repeate).
So Monday we took him to our local hospital for stabilization and transfer to Seattle Children's where his team could admit him and monitor him appropriately.
We have gathered more tools, supports and answers regarding caring for our amazing guy and he had a very informative Swallow Study today that made me feel SO much less crazy.
Still trying to achieve his baseline neuro levels (pain, communication, behavior, gross and fine motor) and a night without choking so much he pukes in his sleep.
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