Miracle Worker, Promise Keeper
“And we say waymaker, miracle worker
Promise keeper, light in the darkness
My God, that is who You are”
Song of the Day: “Waymaker” by Michael W. Smith
Today is Phoenix’s Birthday, so we went home this morning to take the big girls to school. Because of this, we missed the morning rounds at the hospital.
10:41 AM - Hematology Doc Visited - The biggest challenge that we are currently facing is clotting and not knowing why Sevyn is clotting. We have to make sure that her blood is not too thin but also not clotting. The doctors switched her blood thinner from heparin to bivalirudin. They have pinpointed several clots from the ultrasound and noted generalized clotting in her body.
They typically treat clots for at least 6 weeks to 3 months. They will treat her longer if she continues to have clots and they still don’t know why.
When she goes home there are options that are not a continuous drip (shot given twice a day, which is preferred). If they figure out why she is clotting and she is less prone to clotting, there is an oral option.
Ortho - The discoloration of her hand is choosing to not reverse as quickly as it came. Her hand and nails are still very black. When ortho came by to unwrap the dressing, we were visiting with Phoenix, so we are not sure how it looks under the wrap. In a day or two, they will stitch up the skin that is open from her hand surgery.
Neurology - No more EEG machine! I guess that’s a good thing. I thought it was a little too soon, but because the EEG hadn’t shown any more seizures for about a 24-hour period they decided to unplug it. They also decided to decrease the preventative seizure medicine dose and she will be on it for at least a week. Sevyn will get another CT in a day or two.
Urgh.. the lady who removed the EEG was so rude and left all this gunk in her hair. But whatever, she’s still cute! :)
Overall, today was a stable, chill day. Good job Sevyn - you didn’t give us any scares today! There are still so many tests that are pending. They repeated a urine test last night and we are waiting to see if any bacteria grows.
The old clots will take weeks to resolve. The treatment she is on will prevent new ones from popping up. She will have an ultrasound of legs/arms tomorrow to check for more clots.
The IV nutrition started last night!!! Yay! Once she is more stable, she will be able to receive nutrition directly into her stomach.
They did a brain ultrasound. We will hear from neuro about the results tomorrow morning.
They did a chest xray to make sure that her breathing tube placement is okay. It was fine!
She has a lot of swelling in her legs, face, arms, and hands (basically her whole body). It is likely due to the fluids she is receiving in her IV and the fact that she is not moving/exercising limbs as frequently.
She farted today..lol. Daddy was super excited about that - mommy is indifferent. I guess the farting is a good thing?
Her breathing is stable. The heart echo was normal. However, her lab work doesn’t identically match what they expected given the normal echo.
It’s still a roller coaster ride. I guess this is the part of the roller coaster where we are just moving straight forward, maybe with a small incline. A lot happened over the past week, so the doctors are still very worried. She’s still considered critically ill, but today was a stable day.
I just want to hold her. Get better Sevyn, so we can hold you.
Song of the Day: “Waymaker” by Michael W. Smith