Ana is doing well right now. We are looking into getting Palliative Care at home. I am just tired of doing it all and ready to get back to the basics with my other children. She started her new neuropathy medication yesterday and so far so good. As for the bladder medication, Flomax, she can't start it because of low blood pressure. The doctors in Cincinnati realized she had consistently low blood pressures up there and called to tell us not to even try it. It is only a matter of months before we will have to start cathing her.
Now for the motility update... Yes we got answers about her leaking issues. Ana has Idiopathic Intestinal Pseudo-Obstruction! Not the best answer, but an answer... we got what we prayed for. The treatment plan is to catch the episode at onset and switch her to pedialyte at a reduced rate. After 24 hours we are suppose to try to put her back on Elecare feeds, but if that fails we have orders to take her to the hospital for "maintenance fluids" until the episode ends. As time goes on these episodes will occur more frequently. Once we are having to do I.V. fluids weekly, the doctors in Cincinnati will place a central line... to avoid weekly I.V.'s. After becoming more frequent, they typically begin to last longer in duration. Once this happens she will get intermittent TPN. We will use TPN when having an episode and then Elecare when she is well. We are very happy knowing what is going on in her tummy. I hope I haven't confused everyone.
As for prayer requests... pray her bladder and kidney's hold up. Pray also for her G.I. tract. Pray that this new medication prevents the neuropathic pain in her legs. Pray for a complete healing. Pray about her upcoming cardiology re-evaluation for the low blood pressure and heart murmur. Pray for Shey and I as we endure this together with Ana and our other children.
Glad to hear there are answers and a PLAN!! I am always a woman who likes to have a plan! I know that the docs in Cincy will take good care of Ana! They sure take good care of Ky.... Huge hugs and many prayers!ReplyDelete
prayers for you guys.. what chair is that I love that..ReplyDelete