We had a long meeting this morning with the nurse manager from the nursing agency that provides our private duty nursing. Apparently there were things put in place by the previous nurse manager that were against policy - in some cases, it's a very much "letter of the law" sort of fine detail while others were a bigger deal.
We were able to sort out some of the issues to my satisfaction and others still need work. If you've been praying about this meeting, that may be all you need/want to know, but the details are below.
1. We were told that the nurses could no longer fix 24 hours of meds at a time. Noah has dozens of doses of IV meds per day and all of them need to be prepared - drawn up from vials and added to saline and/or reconstituted/mixed then drawn up and added to saline. Even the nurse manager admitted that he's so incredibly complex that there's no efficient way to "fix as we go" and it IS safe to draw up the meds 24 hours in advance. It's important to have this pre-done so the nurses can be efficient and for the sake of Jeff and I who are giving meds VERY late at night and quite early in the morning (and all through the middle of the night when he's really sick.)
I've found in situations like this that asking questions will sometimes open up options, and that's exactly what happened. Turns out the only real problem is when we have different nurses on
different days - Nurse A can't give meds fixed by Nurse B, so the sort
of knee-jerk response was to say they can't fix ahead of time at all. Jeff and CAN give meds fixed by the nurses ahead of time, and the nurses can pre-prepare meds that they'll be giving later or even the next day. Since most of our hours are covered by our primary nurse, this won't be an issue if she's working the next day and I was able to demonstrate a way to tweak the med-fixing schedule to comply with rules if there is a different nurse working the next day.
2. I know this is hard to read or think about, but Noah has had a DNR for a while. The only exceptions to this would be that the nurses have orders to bag him for something that is short term and acute - say he had a seizure and needed to be bagged a few minutes to recover. They also have orders to bag him if for some reason he stopped breathing and Jeff or I weren't there. It's almost inconceivable that either one of us would leave if he were that near to dying, but if I ran to the bathroom or thought he'd be OK long enough to take a quick shower or WHATEVER, we'd want him bagged for those few minutes.
Apparently this is a situation where we can't have it both ways. We CAN have a DNR, but allowing a nurse to bag for any reason rescinds the DNR - CPR has to be done, EMS has to be called, etc. The idea of this being done to him at the end of his life is inconceivable to us and the last thing we want is the chaos of a 911 call for a child that has died.
Everyone is very understanding of where we are coming from on this and the nurse manager is working on trying to find a legal solution that will fully honor our wishes.
This was VERY hard to discuss. The upside is that it is very, very, very unlikely to be an issue as we really don't leave his side when he is very sick. Even so, I HATED talking about it.
3. Here's the biggie. South Carolina laws differentiate between "private duty nursing" and "skilled nursing." A skilled nursing visit is a short visit for a specific purpose, like when the nurse from the hospital comes to draw labs. The nursing given by our nurses is private duty nursing - they are here for 8 hours per day and do as much medical care as needed for that shift.
In SC, private duty nursing agencies cannot also provide skilled nursing. It's the law, and it's nuts.
In the past, if Noah spiked a temp in the middle of the night and needed labs, or if he was already sick but seemed to be taking a real turn for the worse, we'd call the nurse manager who would call a local nurse who'd come out and do whatever had to be needed. Apparently this wasn't supposed to be done and it will no longer be done.
The "solution" we were offered was to take him to the hospital if he got sick outside that 9-5 window of nursing each day. I made it abundantly clear that this was not an option. We've worked very hard to put systems in place that allow Noah to be home during infections or other illnesses. Of course we take him to the hospital if he needs surgery or blood or something that can't be done at home, but we will not take him there just because he's sick. It's nuts to think that if he spiked a temperature after hours, we'd need to drive a sick child over an hour away to the ER in Greenville, sit and wait for who knows how long, see the doctor, get labs drawn, wait hours for the results, THEN try to explain to the ER doc that we just want to get a copy of the labs and go home. See any problems in THAT plan? :-)
Right now if he spikes a temp, labs are drawn from home and are dropped off at the hospital down the road. We have some results in minutes and all the rest of the big ones shortly after. Dr. B calls our infusion pharmacy who rapidly prepares any needed meds and delivers them to our house any time of the day or night. ALL of this happens in less time than it would take to do the whole ER scenario above, and Noah is being cared for comfortably at home and treated with IV ibuprofen, stress dose steroids, and more the entire time as these are always kept on hand.
We kicked around a lot of ideas and there really isn't a great one right now. He gets 5 home health (skilled nursing) visits per month and 4 of them are used up with his weekly labs each Monday. They don't roll over each month so we only have 1 spare visit per month, and no spare visits on a month with 5 Mondays.
One of his former private duty nurses is going to start working at the same office as Dr. B. It's a long shot, but possible something could be worked out for her to do house calls the way Dr. B does house calls. This is highly unlikely to work, and won't work soon, but would probably be ideal if it did work.
Another option is to have me draw up the labs under supervision. It's not at all hard to do, but for my own protection I need another set of professional eyes so no one could ever come back and say that I did them incorrectly or contaminated the sample or whatever. In theory Dr. B could come over and watch me, but we're trying to avoid calling him out at all hours of the night (he works very nearby but doesn't live very nearby). The nurse manager could possibly come out and watch me but could not provide any actual care.
None of this addresses the situation of Noah already being sick and already having had labs drawn, but appearing to take a significant turn for the worse in the night. I don't have the skill set to always know how significant a change is, or if a change is breathing is no biggie vs. very serious, or whatever. Having nurses who live less than 5 minutes away made this much easier. Now it's down to getting Dr. B here (and praying he's not out of town), getting a home health nurse here (and praying he has visits left), or seeing if it would be possible to get the nurse manger just to assess him without giving care
I completely understand that for most of you this may sound nuts. When children are sick, you take them to the doctor or hospital, right? Please understand that Noah's situation is very different. We are more than equipped to care for him at home, and he's made it very clear that he wants to be home AND that he wants to heaven from his bed in his room in his house. Hauling him all over creation for something as simple as some labs or for someone to assess his breathing is not fair to him and is just plain not likely to work as many doctors would take serious offense to the idea of us taking a seriously sick child home from the ER. It's simply outside the scope of their experience and does not sound or feel safe to them. I respect this and don't expect that they'd understand that for US, this is safe and normal and totally do-able. It's very important to respect Noah's wishes and not put him in a position where he could get so sick in the ER that we'd be unable to get him home, or add to his misery and discomfort by such a long outing for a 2 minute lab draw. There is a time and a place to take him to the ER, but it isn't for just getting labs.
I really feel that everyone involved has Noah's best interests truly at heart. Dr. B is out of town right now and I'm very much hoping that when he gets back we can talk and come up with a solid plan of some sort. Please pray that this is indeed the case and that Noah has no need of after hours care until a good plan is in place. I know this isn't a surprise to God, but to be honest it was a very unwelcome surprise to me and I'll feel better once I know what we really can and cannot do to keep Noah at home where he belongs.
Blessings,
Kate
