Posted on December 8, 2017
To say I'm beyond pissed, would be the understatement of the year. Ryleigh saw her Neurologist on November 27th. 11 days ago. I still have NO idea when her IVIG infusion is going to be.
Dr. Maertans was okay with Ryleigh doing the IVIG at home, meaning home health would come to our house, and she would be in the comfort of her own home during infusions. Well, after speaking with the home health company, they informed me, "We have nurses, but we're not a home health company. We can't come to you, you have to bring her to us." Meaning we have to drive even further than the USS Hope Clinic at the Hospital. I told them that whatever they do, it needs to happen ASAP because my child is suffering the longer they wait. She then rudely informed me that, "Nothing will happen ASAP."
After talking with Tim, we decided that this isn't Ryleigh's best option. We don't want her to have to get used to a whole new group of nurses, when she's already familiar with all of the amazing nurses at the USS Hope Clinic. So, I called and asked for it to be switched back to the hospital, because they will have to access her port each time, meaning we have to hold her down so they can put a needle in.
I have been calling the nurse manager at the Neurologists office since LAST Friday, and she still hasn't returned my phone call. I just put a call in AGAIN to the Neurology clinic for someone to call me so I can figure out what the hell is going on. I talked to the nurses in the USS Hope clinic and they said as soon as they have orders, they are ready for us. So basically I am waiting for them to send an order over to the hospital, which is across the street from them so Ryleigh can have her IVIG.
#RyleighStrong #OpsoclonusMyoclonusSyndrome #ILoveA1in10MillionKindOfKid