I thought all night of ways that we can set Kai up to be long terms successful & stable at home- What I have been working towards for months & months. There’s no way her doctors can think that Kai will be able to go to school with her having uncontrollable vomiting and pain, & not sleeping. There’s no way for Kai to be successful if I’m too drained and can’t care after her properly. Setting me up for success is setting Kai up for success. These are issues I’ve been bringing up to her medical team for months. And they still have no answers or no plans as what to do, which I can try to be understanding about, but a plan to get answers and resolution would be appropriate. Weeks ago, her nurse practioner said she would get Kai on the roll with outpatient endocrine, GI, genetics, therapy. And the still have no schedule put together, which the scheduler even found to be odd. I need the referrals for the appointments put in, because when I call to get appointments, they tell me they are booked up to 9months. We have already been doing this tango for that long… They won’t set those appointments up while she is inpatient, even though Kai is inpatient more than she is outpatient. How long are they going to lead us in circles? Should I just go on strike at the hospital until they put some appointments together to start working on how to manage Kai’s symptoms…? Kai’s next appointment is October 2nd. Over the past several months, the interactions between her doctors and I have become more and more tense, because I keep pushing for resolution for Kai. There’s only so many ways I can say we need to figure out why Kai can’t eat, is in pain, and won’t sleep so much that it’s causing her to have to go in through the ER several times a week. I’m wondering yet again if transferring is the best idea… Back to that point of the circle we keep spinning on.
#kaicanmovemountains #figttforacure #gogold #atrt #22q13 #latergram