Last night was great. It was somewhat stressful trying to remember what medications to give and at what time. There were no nurses here to help out!! Delaney slept about 10 hours. She woke up a happy girl, looking at birdies and squirrels outside the windows. Of course she had her daily dose of chocolate milk. About 9am we were attempting to do our first at home Heprin lock on Delaney's Broviac and of course neither of the 2 lines would flush. After calling the pediatric unit at Kaiser Oakland they advised us to go to the ER and have them put TPA in the line to break up any clots or blood stuck in her lines. This is the same medication they give stroke victims to break up a clot. We sort of took our time since none of us were anxious to go back to Oakland. Luckily we waited because Delaney had her second episode of vomiting. Shortly after we cleaned her up we made our way to Kaiser Oakland. The Broviac care is so specialized that we were on edge, so luckily a few of the PICU nurses came down to help us out! (Go Victoria and Laura! :-)) Luckily they were able to put some TPA in her lines and within an hour of doing so Delaney's lines both flushed. We spent about 5 hours in the ER. We are hoping for an easier day tomorrow. We got home around 6pm and of course Brother was here waiting. Delaney and brother shared a few snacks and watched Brave. She is still suffering from the posterior fossa syndrome, and on top of that is still receiving meds which cause her mood to change throughout the day. One minute she is happy and laughing and the next minute she is crying and upset. We are hoping that once we have a few good days at home she will start to feel better again.
Thank you all for your love and support. GO TEAM DELANEY!!
"And though she be but LITTLE, she is FIERCE!"
Dont forget to show Delaney, what TEAM DELANEY is all about, show her your FIERCE!, wearing your shirts. Send pics to 925-337-3371 or firstname.lastname@example.org so we can share.