There really is nothing of note to report for the last few days. No News is Good News around here actually. That is not to say we have not been busy. Elias still keeps us on our toes and constantly alert and evaluating. It seems like just when he is showing significant signs of something worthy of calling the doctor, he turns it around, back to normal. So, we are learning a little discretion and patience when it comes to things like that. For example, his ostomy output was horribly low for 2 days, but overnight it got back on track. We have not had any Dr. Appointments this week and that has been nice. We have our Hand Surgeon appointment on Wed and Urology & Pediatric Surgery Appointment on Friday. The following week is our busy week, with three specialist visits and a surgery. We also are due for his RSV vaccine from his pediatrician as soon as it comes in.
The only other thing of any significance is the nursing situation is still slightly odd. It seems as though we have encountered every hurdle imaginable, and that was the Nursing agency saying that. To sum up what is going on as simply as possible: The ideal scenario is to have 2-3 nurses per case. One for Monday-Thursday or Tuesday-Friday. A second for Friday, Saturday, Sunday or Saturday, Sunday, Monday. With a third nurse for back up when the others can not work or are sick. As of this moment we have five different nurses with two days still uncovered. One of the five is strictly emergency back up because she can not work nights, with rare exception. Unfortunately, their usage of her really pushes the envelope on the definition of rare. Thankfully, she is totally in love with Elias and feels bad for us. Is that not our luck, the one nurse that really cares is not available for us full-time. We have one nurse that works Friday & Saturday nights for us, but outside of that the other nights are one night a week nurses. As we said Tuesday & Thursday are still open. This is why the agency said they feel like we have encountered every hurdle. Tuesday was covered by our Friday/Saturday nurse, but she has to give it up due to childcare issues on that day. So it is conceivable at this point that we are going to have six to seven different nurses, each with their own very specific time limitations. Having that many nurses leads to inconsistency of care for Elias. It is not about incompetence, but rather methodology. Everyone has their own way of doing things and our way might not be completely comfortable. It is not wrong to do it their way, but even our preferences are interpreted differently from nurse to nurse. In other words, there is more than one way to skin a cat, some are just better than others. Changing agencies does not seem like the best option right now, because it seems as though we will have the same problems. Our agency has now been trying to subcontract our open days out for a week, with no leads. That is sort of a sign of the time I think. There are just not enough quality nurses out there. We have decided to tolerate the schedule limitations for a brief period and trial them. However, it is supposed to be about meeting our needs for sleep. So if things are not working out, I suppose we will have a new hurdle to jump.
Here is to another quite week, with only fun things to update everyone with!! Thanks again for reading. Take care!!