We made it to Durham fine. Vanderbilt did not go well this morning. Nearly 3 hours at the clinic and zero answers, treatment or resolution to this skin thing. Obviously not a yeast infection as it is peeling off and looks like a steam burn today. We were nearly late for our flight as we waited and saw 2 other doctors besides the NP, we saw 3 last Friday about this. Very frustrated, it is like Nathan is part alien and has abnormal issues that they have never seen before?? The issue of a preventative PCP (pneumonia) drug was also dragged up after all this time, so you can imagine my intense frustration on that. Nathan has a serious allergy to sulfur and Vanderbilt does not treat with pentamadine. Wound care comes up with silvadene cream to treat Nathan without checking the chart, so near miss catastrophe on that as she was just about to slather him up before I got that stopped. I was on the phone with Duke and Dr.G as soon as we left the parking lot and they will see him in the clinic first thing in the morning. Dr.G is concerned about staph or strep and I am worried that this will extend our trip. Nathan is happy and hungry, waiting for pizza delivery. We are exhausted, it was a super long travel day. I am super thankful that Nathan has not had any significant setbacks these past few months as I am concerned once again that Vanderbilt is not equipped to deal with what we have going on, big or small. Just an off day I hope and Dr. Esbenshade has not been available. Thank you all for your thoughts and prayers. Some rest and food and things will look brighter. XO
Posted on: Tue, 01 Oct 2013 22:40:33 +0000
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