Over the weekend I submitted "Feedback" about our bad experience being bumped last Friday. I tried to make it constructive and pointed to the things that were a particular problem:
1) The fact it happened.
2) The last minute notice.
3) The lack of empathy (from everyone except the Cardiology Social Worker) and,
4) The feeling of being left without any 'advocate' in our medical team.
Today, I received a call from the Director of the Children's Heart Center - Joni Blanchard (??). She had a very easy manner and I felt she was looking for ways to do things better. She said that she had investigated what happened on Friday and it was a combination of issues. In addition to the Hospital running with little capacity, I learned that the main problem was that Dr Johnston did not request a bed when he booked Wren's cath. She did not know why he did not do so (perhaps he did not read the details enough to know the high odds of requiring an overnight stay or it could have been an error). Regardless, a bed can and should be booked beforehand despite what he told us to the contrary.
On this point, apparently our bed booking for August 7th is "contingent". This means we are on a waitlist for a solid booking and could have Wren's bed booking bumped for higher priority cases. However, on Tuesday 5th there is a "solid" bed booking available at a time Dr Jones has an opening. I am waiting to hear from Briana [surgery scheduler] whether this is first case or something later - we will have to make a decision then but a confirmed bed sounds less risky for a repeat bump.
I also asked about the continuity of care and advocacy for Wren. I wanted to know who was our point person on the Children's Staff. When you have a cardiologist it feels like you have a primary relationship with them because of the continuity of treatment. I feel that Dr Lewin is like Wren's heart care manager but perhaps they don't perceive it in that way. Perhaps they feel that the whole Heart Center works together. From a patient perspective, it seemed that once Wren was referred for cath, the cath interventionists became his entire medical team and existed in a vacuum from other areas of the hospital. I suggested to Joni B that we would like to know who is primarily looking out for Wren beside us. For example, I would have appreciated a call from our nurse at the Children's Heart Center or from Dr Lewin (who is on vacation this week it turns out). If 'our' nurse had called and said "I will make sure Dr Lewin knows what is going on" or he had called us at a later point that would have left me feeling that they 'cared' or at least was overseeing things and making sure that their patient was treated with appropriate priority.
We now have a confirmed reschedule:
Tuesday 5th August at 6.15 am (first case on early start day is 7.30am)