When the Going Gets Tough…

The tough go to New York.

Tuesday was my marathon day at Hopkins. I started at Wound Clinic, and, as always, it was not good news. The wound seems to be stalled at 1 cm across with a 1 cm pocket. It has been this way for at least a month. Jerry, my bandage man, tried a little brainstorming with the nurse. We are getting rid of the collagen, keeping the aquacel dressing and covering with a silicon bandage to keep out air. Who knows if it will help. I think the nurse has run out of ideas.

Next stop was OT. My arm had been in intense pain since Thursday's visit. My therapist was not as aggressive this session, and my arm is slowly improving, though it is still not back to where it was.

We then went to see the physiatrist. As I knew, she said the prosthesis is a no-go until the wound is healed. I once again asked her about osseointegration and her response was that is only an option if I fail at using a socket prosthetic. She also said, why would I want a bolt sticking out of my leg anyway. And she is the physiatrist on the osseointegration team.

Next was an appointment with the physical therapist who wants me to come back once a week so he can watch me hop up and down the hall. Using a walker and putting weight on my arm that already hurts badly.

I left Hopkins feeling defeated and like crap. In my OI (osseointegration) research, I read about a surgeon at the Hospital for Special Surgery in New York who does a one-step OI surgery, whereas the majority of surgeons in the US to the FDA-approved two-step.

So today I called his office. Someone actually answered the phone without having to go through 15 prompts. And she scheduled me for a consult on February 14. Happy Valentine's Day to me.

Earlier in the day I tried to find out if the new OI surgeon does the one step process. I didn't hear back from his office, but I did hear back from the prosthetist, who had also been in the appointment with the physiatrist. He doesn't work for Hopkins but he is there all the time and knows everything. We talked on the phone and he told me Hopkins has an OI clinic once a month. Again, news to me. He said he would get in touch with the coordinator to get him to call me.

I did tell him that I felt staff at Hopkins work in silos and it was hard to get information, and I really appreciate him helping me. I was honest with him and told I felt that I was not being listened to. He promised me that if I went to the OI clinic I could get questions answered and a whole team would be there.

So after yesterday's negativity, I feel a whole lot more positive today. And more in control. Once again, I realize if I am not assertive my wishes and concerns will continue to take a back seat.

I'm over being in a holding pattern, I'm ready to get things done.