A day with no bad news is a good day for sure. The day started out pretty rough mostly because Rafi and I didn’t get much sleep and then she had a moderately violent vomiting episode. Being that we stopped her gtube feeds the night before she didn’t have anything to throw up except some mucous, so that was fun. Of course this happened as I was changing a diaper and the back of her thighs are pretty beat up. She was thrashing about as I was trying to do two things. First, I was attempting to keep her on her side or her stomach so she didn’t aspirate anything and at the same time trying not to do more damage to her lower half. Her skin is breaking down, so she has more wounds that aren’t healing which is no surprise as she has no white cells to help in that process. Thankfully, I kept her on her side and I didn’t do any further damage. I honestly have no idea how that all worked out especially considering I didn’t have a cup of coffee in me yet.

Following that fun joy ride, Rafi had a nose swab to check for a couple of viruses, like influenza. We did not like the idea of doing this to the little one. However, she’s had some pretty high fevers that are consistent and the doctors felt we needed to rule everything out. So we gave her some ativan to calm her down so she wouldn’t jerk around and potentially hurt herself. In hindsight, we probably didn’t need the drug but you can’t be too safe. I put her on my lap, and cradled her head to limit her movement. The swab itself took two seconds and she understandably got pretty upset, but Jackie was able to calm her down after ten minutes. While we are still waiting on the actual culture, which could take days, we got back results that came back negative.

Because we gave Rafi the ativan we decided to postpone the bandage change until later in the afternoon. We wanted to avoid giving her too much ativan within a short period of time and we wanted to have the Tylenol within it’s peak so we had to wait. We paid for that miscalculation as it proved to be a difficult bandage change. Based on her reaction to the soapy, saline-like water solution, we believe her skin is just more sensitive after the chemotherapy. We gave her a bump in pain medications but that really didn’t help. We think she was anticipating pain, after the first jolt, and was scared of it so she was shaking some. But we had to do it, and in the end she endured and then passed out. I am putting good money down that Jackie is going to have a long night for a couple of reasons, not the least important factor being the time and duration of the nap Rafi had after the bandage change. I think a large coffee with an extra shot of espresso might be justified for Jackie come the morning.

So far this has been a tough road but it hasn’t been impossible to navigate to this point. While that could change at any time, and it probably will, we haven’t doubted for one second our decision to move ahead. I know there are others who want to follow in our footsteps but are questioning their fortitude and the risk reward ratio. Know this, we are under the best of care here. The doctors and nurses are top notch and they stop at nothing to care for your child. They are willing, eager and able to learn about caring for an EB child and they will work with you to address your special needs. If you do decide to move ahead, as we have, come with your eyes open, be well rested, and have a support network ready to spring into action.