The discharge meeting was rather uneventful for such a significant meeting. Representatives were there from each area; the Department of Specialized Child Care, our nursing agency, social workers, care planners, respiratory therapists, medical supply company, and of course, Kate and me. I say representatives because Leo's pulmonologist, DSCC rep, and nursing agency rep (all key players) all had to have their backups attend because they had conflicts. The nurse who scheduled the meeting failed to check with everyone before she scheduled the meeting. The meeting only lasted about 15 minutes and consisted of everyone updating the group on where they stood with their responsibilities. While everything was important, we really only cared about the nursing agency updates because that is the critical piece of information that determines when Leo can go home.
As of today, Leo's date is tentatively set for May 13th to go home. Yes, we are very, very excited about this. However, my guess is there is about a 50/50 chance that we will make that date. The nursing agency right now only has 1 full-time nurse hired for day shifts with plans to interview another one on Wednesday. They did have two hired but they had to fire one who was working for another family but was going to shift to us. To put that in perspective, they have been recruiting for about 6 weeks. In the past 24 hours, Kate (with the help of our friends) has recruited another 3 that have started through the hiring process. It seems like we might be able to nurses for day shifts but the night shifts, which we need the most, will be difficult to recruit.
So we asked at the meeting if we had a majority of the day hours covered, could Leo still go home knowing that Kate and me could stay up at night when needed and sleep during the day. We just want to get him home. At first the answer was no because the day shift nurse may not show up and would require us to stay up for 24 hours. My response back was that the same thing could happen if we had a night nurse not show up. Our respiratory therapist jumped in and also supported us. While we wouldn't be able to sustain this approach forever, it would at least allow us to get Leo home and hope that the nursing agency comes through. I think our sleep would be about the same since we really don't sleep at the hospital and spend a lot of time driving back and forth to Peoria.
Leo continues to do well on his trach collar trials. He is now up to 8 hours per day and will increase again on Wednesday. Leo's PIC line and heart have been another story. About 4 am this morning, he started setting off alarms on his heart monitor. They are alarms I have never seen before but no one has seemed to concerned with them. After an x-ray, they decided to pull back his PIC line again so it wasnt so close to his heart. They did this about 5 pm and he was still setting off alarms, but not as frequent. So he had an ekg done to determine if there is a real issue going on because the ekg will detect 12 reads on the heart while current monitor only has 2 reads. The doctors don't seem to worried but we'll see what the cardiologist has to say tomorrow after he has reviewed the results. Cardiology is one physician specialty Leo has avoided with all of his medical challenges and we hope it continues to stay that way.
To end on a positive note, we had a good weekend. I'm sure Kate will post some pictures in the next couple of days from Easter. We accomplished everything we set out to do; visit family, not be away from Leo too long, and give Sammie a good Easter.
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