Happy Halloween….

So yesterday, Halloween, we go in for blood work and an ultrasound for Bella. Her entire body aches, and her PICC arm especially. Get the blood work, then head across the hospital to get the ultrasound, and get told she has chronic blood clots in her veins. They don’t treat these, and said they don’t think they’ll move to her lungs, sent her home. They are in VERY dangerous areas and she fought for the doctor to explain it to us.. But..

On the drive home, we get a call from her doctors office saying to go to the ER immediately because her labs from earlier in the day came back possibly life threatening. So we turned around, skipping any chance of trick or treating, and then it took almost 2 hours to get a bed at the ER.

ER ran some testing, ordered a CT to try and make sure it wasn’t in her lungs already, luckily They ordered her Rocephrin and got it to her on time as well. Could have been a much worse stay. However they did decide to admit her, because they wanted to find a way to get her some anti coagulation due to clot severity, and figure out her IV pharmacy.

By the time we get a room Its almost 2am. Savayah gets woken up by transport, and we’re all suffering. We get to the room and set up, as savayah tries getting into everything, it’s all kind of a blur from there. Night doctors and nurses in and out for a while, one saying the clot is in a bad position to go into her lungs, and a long night overall. Finally got savayah to nap around like 7am… Caught a smallish nap, im pretty sure Bella stayed awake.

Cut to 11am, maybe an hour ago from the time im writing this. Doc comes in saying theyre chronic clots. They aren’t treating them, and they’re not going to figure out IV supplies past calling her PCM who has been dropping the ball on this for the past 2 months. We’re out of supplies. These are daily and life saving supplies and meds, basically she dies FAST without them. We cant substain her fluids and keep her at home. We cant keep her PICC line clean or access her port to keep it open as it heals.

They’re going to discharge her, without even trying to figure out how to keep her safe from here. No way to try and get rid of the clots that hurt her constantly. No way of keeping her lines clean. No way to ensure she has home care, we may just have to get discharged and head back over to the ER at this point. We don’t know what to do, or how to do it. We need help, and at this point i don’t think we’ll get it.

On a side note, The worst part for Bella is being alone.. She wants people to love and care for.. To hug and be there.. She begged me to take her to church and we went.. My PTSD kicked in as soon as we got to the parking lot.. Bella reassures me she wont ever push me out of my comfort zone.. I get her wheelchair and her bag and see her brave and broken body struggle to push her in.. She comes out at the end distraught.. Cried HARD all the way home and she never cries.. Not even surgery with no anaesthesia.. She felt the love people had.. But it hurt her.. Like she is walled off from wanting the love but not getting it from the ones she loves the most.. All she said is she couldn’t do it.. Couldn’t even attempt to put herself out there even if no one even knows she did.. It broke her inside.. The truth is I know she wants to go back..,she wants to find that family she deserves, savayah deserves,.. We all deserve.

More will come later, it’s been a long day/night/day so far… Pray for us.

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