The doctors were the most helpful for the most part with regards to the technical aspects of care for him. The director of the PACT team at Children’s was very attentive and very concerned about not only how he was doing medically but also what his day to day quality of life was like. She translated what was happening to him medically into those terms to us.
The PACT Team
When we left the hospital about eight weeks before she died we met with the PACT team at the hospital and they were very helpful in explaining the process and what to expect for her at the end.
PACT Team #2
All along, the PACT team at Children’s was an incredible resource which every parent should have access to when they have a terminally ill child. We had tried to talk to people before about how our daughter might die and it was very difficult for anybody to have that discussion with us. It was a subject that people didn’t really want to face. It was our first or second meeting with the PACT team that we again asked the question and they walked through with us how she might possibly die. As we got closer to her dying those discussions became more intense and more specific. I think without them it would have been very difficult. We were as prepared as we could be. We got advice on what not to do and other suggestions. They were always ready to give support to our kids. Our kids have not taken advantage of that, but it was an invaluable resource to us just to have honest discussions about end of life.
The PACT Team #3
The Palliative Care Team (PACT) is impossible to beat because they are trained to deal with walking the pathway to the end of life and they are very skilled at it. I cannot imagine going through this without them. They are the one universe that manages to make you feel that they do have time for you. Everybody else truly is on a schedule. We were treated well by everybody, but the PACT team was extraordinary.
The PACT Team #4
What was really helpful was the PACT team, and everybody involved with the PACT team. That was the geneticist, the Reverend, and everybody there who came out and met us when we were staying at the Family Inn, which was the family home for transplants. The continued contact with the doctors and the nurses, and the PACT team, and the genetics team, everybody there. And the psychiatry department, they were involved making sure that we were coping with everything ok. And to be invited back to attend services and seminars for bereaved parents… We did come back for that seminar in April for a service on bereaved parents.
I think the other thing that was a unique gift for us was the pediatrician herself. She is an extraordinary person to start with but she really did help us. She came to our home more than once. When we called the doctor’s office they were all primed, and it’s not that we’re more important than anyone else, it was just that we were dealing with a life threatening illness. It just made a difference to know that when the rubber hit the road and it was really important she was there. She came for eight weeks every weekend.
There were a number of guiding lights at the hospital that we dealt with, including our pediatrician who was in our community that really helped us to navigate that journey.
Most of the nurses we worked with were very caring, very down to earth. It was really helpful.
Our social worker/case manager was wonderful.
We also had in home nursing, who provided as much support to us as to our son because they would listen and they would be there for us as much as for him, and talk through the decisions we were making with regard to his care. They had been with us for a long period of time when you look at the trajectory of his life, and that was very helpful as well.