Baseline
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The Burkett Family
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The Burkett Family
(Update transfer from Caringbridge)
June 17-2024 We made it back to Baseline. We are all sick with respiratory issues. But it's normal sick. We can do normal sick as long as it doesn't cause a new flair in either Braven or I.
June 17-2024 We made it back to Baseline. We are all sick with respiratory issues. But it's normal sick. We can do normal sick as long as it doesn't cause a new flair in either Braven or I.
He's processing the past week of 5 hospital experiences SO well:
Yesterday was spent in HOURS of medical play, giving his dolls, shark and moster trucks IVs over and over and over, repeating comforting and helpful phrases he heard in hospital.
Here is a list of medical play items that would really help his processing. All of these are items he deals with regularly such as IV poles, double infusions, butterfly IVs, flushing syringes, stretchers and hopsital beds, etc.
David returned to work today, even though he's yet to sleep through the night. He's been very sick himself with respiratory issues. Hoping he is able to get to his natropath today.
David returned to work today, even though he's yet to sleep through the night. He's been very sick himself with respiratory issues. Hoping he is able to get to his natropath today.
I'm working on getting medical IDs ordered, connecting with his neuro team in Seattle and getting and some pediatric durable medical devices (his new medication requires regular blood pressure and heart rate monitoring).
We are waking up multiple times a night to check Bravens's heart rate hasn't dropped too low. We need something that will alert us, so we can actually sleep.
All of this flared my HM and other neurological disorders, but my neurologist was able to call meds in for me to keep me at Braven's side in the hospital instead of ending up on my own hospital bed.
Fun fact: Braven and I are on the same medications.
Bravens size requires his meds to be compounded into a liquid form however, and insurance doesn't cover compounded meds. Even though that's literally the way to get vital daily medication into a pediatric body.
Getting back to baseline is incredible (make sure to read the past week's journal entries to understand the cycle better) but it is also a very confusing space.
It's like your own body gaslights you.
What stroke symptoms? You were in 8/10 pain? I don't see it? You are walking fine. Look you can run! Whoops you fell but that's normal. There was a bump in the rug. Are you sure you didn't dream the last week? Cause you look totally normal. Why are you taking medications? There is no way you are at risk of stroke or coma from a little "headache". Why are you so tired? Why is the fridge and pantry empty? Why are you so stressed? Why cant you get the house clean and laundry done? Stop being depressed and just clean the damn house everything is fine.
It doesn't help that by the time we risk being around others, going to the store, attending a party, visiting David's work, aside from the constant sunglass wearing, nothing looks wrong.
We don't know how to respond to the constant comments of, "He's looking so great! He's recovered so amazingly from the TBI!".
We are waking up multiple times a night to check Bravens's heart rate hasn't dropped too low. We need something that will alert us, so we can actually sleep.
All of this flared my HM and other neurological disorders, but my neurologist was able to call meds in for me to keep me at Braven's side in the hospital instead of ending up on my own hospital bed.
Fun fact: Braven and I are on the same medications.
Bravens size requires his meds to be compounded into a liquid form however, and insurance doesn't cover compounded meds. Even though that's literally the way to get vital daily medication into a pediatric body.
Getting back to baseline is incredible (make sure to read the past week's journal entries to understand the cycle better) but it is also a very confusing space.
It's like your own body gaslights you.
What stroke symptoms? You were in 8/10 pain? I don't see it? You are walking fine. Look you can run! Whoops you fell but that's normal. There was a bump in the rug. Are you sure you didn't dream the last week? Cause you look totally normal. Why are you taking medications? There is no way you are at risk of stroke or coma from a little "headache". Why are you so tired? Why is the fridge and pantry empty? Why are you so stressed? Why cant you get the house clean and laundry done? Stop being depressed and just clean the damn house everything is fine.
It doesn't help that by the time we risk being around others, going to the store, attending a party, visiting David's work, aside from the constant sunglass wearing, nothing looks wrong.
We don't know how to respond to the constant comments of, "He's looking so great! He's recovered so amazingly from the TBI!".
We aren't going to announce that we are headed home because he told us his feet are "sparkling" or we see him starting to limp and know we have to get meds in him and get him to a controlled environment fast.
This leaves Baseline a very isolating and misunderstood space to be. Feeling like the only ones in the world who understand it's going to happen again. And it could start in 5 minutes or 5 hours.
We only dream of a time where we may have 5 days between attacks.
That's us today. Dazed, confused, exhausted, sick, not even sure what to prioritize, and mostly feeling so so alone and isolated...
I've got to sign off now, because Braven just came to me to tell me his ears are "singing" and his head hurts. Looks like we are leaving Baseline again. ðŸ˜
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