[janfrn]

We currently have two patients in our unit being bridged to transplant with Berlin hearts. We had one about 14 months ago who had 'failed' on ECMO, got a Berlin heart, was on it two days then had a transplant. So this is really our first experience with caring for these kids. What I'm interested in knowing is: who cares for the patient? Who cares for the heart? What types of complications are possible (other than the obvious)? What's the longest a patient has done well on one? How many times have you used them? How many are you comfortable running at one time? (Or maybe that should be... how many do you physically have? I thought we borrowed the one we used last year, but here we are with two.) It seems that our management is sort of making up our policy as they go along. First it was only ECMO staff who could care for the patient and the heart. That rapidly became a problem when we put the second kid on... we only have two ECMO specialists on at a time, and more than half of them are RRTs... Then it was decided that a nurse who had been trained in care of the ECMO patient (our Phase 3) could look after the patient, but not the heart or its documentation. Now it's been decided that Phase 3 nurses can care for the patient and the heart, and do the documentation, but an ECMO specialist must do a full system check every shift. Yet another of our standards falls by the wayside. Sign me "Anxiously Anticipating Answers."

[sandygator]

I have recently returned to the PICU after 7 years away. To my surprise our unit is also now the pediatric CICU. We currently have one 9 yr old who is day 49 on the berlin heart. He is doing very well with usually bid electrolyte replacements, q week teg studies, off heparin on coumadin. Nutrition is a bit of a problem, but his appetite is improving. The bedside RN is responsible for Q 1 hr. inspection of the BIVADS as well as recording of the pump settings and pressures Q 1 hr. We have also a perfusionist (who is ultimately responsible) on call 24/7. Our pt ambulates at leat QID with one nurse pushing the pump and another pushing the chair behind in case we need to rest. We have 1 other pump kept for emergency back-up. The FDA has not approved the heart for use yet, so it is being used on some special mercy plea (I'm not at all sure exactly what the termionology is), and we too are sort of making it up as we go along so to speak. We currently have a second 9 yr old patient listed 1-A in whom they are thinking of placing a THORATEC VAD because we only can have the 1 Berlin. The VAD class I attended
taught us that earlier use of the devices is yielding better outcomes..placing it before the child is so seriously comprimised due to decreased perfusion for a long period. What do you think?

[janfrn]

Now we have three kids with Berlins. A group of staff from our unit went to Germany recently to do some advanced training and to see how their program works. We've been designated as the Berlin Heart training facility for Canada (someone said North America, but I don't know if that's right). In between my posts, the entire policy went out the window and now they're assigning the kids to new, very junior staff and having one of the Berlin-trained nurses doing the checks on the valves, settings and pressures. Our first patient has been transferred to the step-down unit, and she comes down every day to visit. She wheels her own battery pack around and is looking really good. We may even be able to decannulate her soon. The second one is up and around every day wearing his Superman costume. He just had about 80% of his teeth capped so that if he got a heart he could actually be transplanted. The third one hasn't been stable for very long, but seems to be doing okay.

I know that the first child we used the Berlin for back in the summer of 2005, who was only on it for about 3 days before he got his transplant, did very well and has been home for a really long time. I guess we'll see what happens now.