I am but one but I feel like none
I'm 22, female, Bachelor of Musical Arts Major/Psychology Minor
I am tired all the time.
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Changed my psych classes around for the semester and added a Neuroscience class because of Blake. I have to know what’s affecting his brain.
Things have been building up with Blake, taking care of him, his family, getting him ready for school, getting me ready for school, and finally today my mother called to scream at me that I had the mother of all anxiety attacks (thank god I was driving and not with Blake).
I couldn’t afford the ER, so I went to Ready Care(a fourth of the price) which is a pale Urgent Care in town, and the doc actually helped. He put me on some new meds, maintenance meds, not just benzos or something, because all of this won’t just go away and it’s a lot for anyone, let alone a 22 year old.
But he’s making me come back and see another doc tomorrow, which I am NOT happy about. I wanted to be in and out and happy again, or at least functional, and back to Blake. But I will do whatever it takes to make myself the best caregiver I suppose.
Because I’ve been tagging a lot of Chiari Malformation….
If you have any questions about the malformation, or decompression surgery, please ask. I have been with Blake from pre-diagnosis throughout the entire process. I have done a LOT of research. If I can’t answer your question, I will openly tell you that as well!
I can ask Blake questions about how things feel as well if you’re curious about that aspect as well.
Chiari is not something to mess around with. It can be a life threatening situation.
Some neurologists will not take it seriously until it is posing a threat to your life - do not wait. Find a neurologist who will refer you to a neurosurgeon as soon as you have symptoms!
This is Blake’s beautiful head. The top one is from his hemmorage - they incorporated the attempted shunt in the incision to lower the risk of infection. The neck is his Chiari Decompression. This is in the NeuroICU right after he got his wound drain out. It’s looking better now, but his head still bleeds when it gets swollen (It’s a scalp thing).
He still has a long way to go. That giant incision on his head was so they could take out a baseball sized blood-clot between his skull and dura. It was pressing on his right frontal lobe, leaving lasting damage that we don’t even know the extent of yet, 11 days after surgery. He’s having some issues with his left side, balance and coordination issues, and we’re trying to determine personality and mental status changes.
This is why we need your help. He will be in the hospital for at least 21 days total, straight, with frequent doctor visits afterwards. We need help! Anything is a huge help, even just spreading the word helps.
Because of his brain bleed, and the accompanying deficits that go along with having your right frontal lobe be compressed by a blood clot the size of a baseball, and because Blake still needs to be supervised medically, Blake will be in Inpatient Rehab for at least 2 weeks. That is a minimum of 21 days in the hospital for him.
Please, help spread the word, donate a little something, anything! We need your help!
Like it’s called
How To Build A Better Boy
These girls are super unpopular and want a boyfriend, so they hack their dad’s company computer and steal his robot and create themselves their ideal boyfriend out of this robot.
I brought a collection of 25+ of Blake’s favorite movies and he wants to watch this shitty Disney Channel Original Movie that was made for 12 year old females.
That’s okay, but wtf Blake’s brain?
Tonight is the first night I haven’t been able to spend with Blake. He’s in Inpatient Rehab now, still monitored (actually, he has more nurses now), but he has to be alone after 8:30pm.
I can’t help but think - what if he’s lonely? His room looked so unfriendly. What if he has to pee or poop, but can’t because the nurse is someone strange, or he can’t lean his head against them? What if he wakes up to tell me a story like he does sometimes now, and I’m not there? What if he doesn’t listen and tries to get up to go pee by himself?
I am afraid of all of those things and of all the unseen things that could go wrong. I am afraid because I cannot protect him. I already couldn’t protect him once.
Today is our official 3rd anniversary. He tried to play video games unsuccessfully and together we fed him Olive Garden. A good day.