"Do not pass go. Do not collect $200"

Well, I guess I know why I was so tired. I went to the doctor on Tuesday and got a "Do not pass go. Do not collect $200" pass to the hospital. I was not ready for this one, but I don't know why it surprises me to go to the hospital after all of the trips in the last couple of years!



Anyway, there was so weird stuff with my heart, that resolved, but they said I had pneumonia. I was hooked up to an IV to get antibiotics because I am allergic to almost all known medications. I was thinking I would be a very boring patient but then my head swelled up like a balloon! I was allergic to the antibiotic again! I was then switched to two different antibiotics and sent home on a third. Of course, as I am writing this I am breaking out in hives from the antibiotic again! Really? I can't just take a medicine and get better?



I was introduced to a cardiologist, in the hospital that actually knew about EDS. She also knows my new neurologist. I had to go to a new neurologist about the abnormalities in my brain (no kidding). I was told by my geneticist to play down the fact that I had EDS so the doctor does not turn and run. So I was expecting a very quick visit. Well, it was not quick. He came in the room and said, "You'll never guess what I did yesterday." As strange as many of the doctor visits have been lately, I was ready for anything, except what he told me. He said that he had just given a talk at the children's hospital on the genetic reasons for strokes and part of his talk was about EDS. He got that same "sick" look on his face as many other doctors. He as very interested in my case as my images were not so ordinary after all. He got really "excited" when he heard about my mom. He wanted to see her right away. He was hopeful that he could save us a trip to the Mayo Clinic, which was rescheduled for May. He said that this was an interesting case and he only had one other patient with EDS and they did not have the same issues. I just told him I was tired of being interesting. The truly scary thing about this is the ramifications for the girls. When I went to leave, he said if I was okay with this news or have any questions. I asked him if I needed to worry this very minute. He said, "No." I said, "That's good enough for me!"

Back to the cardiologist, she said that I had to keep my blood pressure very low, so I did not have any more blood vessels breaking in the brain because of the EDS. So, add another doctor to the list.


I did get to check out the hospital in West Chester as this is the one that the spine surgeon would like Elizabeth to have the C1-C2 fusion. We have been very leery about considering a surgery outside of a children's hospital but many of those fears were put to rest after the visit. The nurses were very nice and truly care for their patients. We still have a long way to go on the decision, but it did help. I think I would have been just fine researching the hospital with a tour, not an admission.