AT HOME

We are home. I am glad we divided the days leaving the hospital and driving home. It was not a difficult trip, but Philip is very weak and tired. He is able to get up and walk around the house but only for very short periods of time. We had some dear friends stop in yesterday and he was really happy to see them, but really sat very quietly. We will try and take him for some short walks and begin to get his strength built up. I am very grateful that we are making movement towards transplant. It is clear that it is not going to be easy on Philip, but he is very compliant and takes it in his stride. His humor is amazing. He keeps me laughing, but the most wonderful part of his humor is that with everything he is going through he still has humor.

I am working hard with the medication and pump. Although the process is complex for a non medical person, it is doable. I take it one step at a time, slow and precise. The thing is, it is not the same everyday. Although I do put together and change the pump and cassette everyday, some days I also need to change the tube the goes directly into the central vein; sometimes the bandage that holds the line needs to be changed; and sometimes the batteries need to be changed. I just think it through, plan it out, and move forward. The distribution company, Accredo, has nurses still coming out to educate me, and they have a nurse on call 24/7 for questions.

As recommended, we have put together an emergency kit to keep with us in case there is ever a problem. We are blessed that we have 911 if we need it.