DorrieDorrie

Nurse Random, or Continuity of Care8

Not being familiar with other hospitals, I am not sure if the situation here is typical or not. But regardless of how common it is, it’s an enormous problem where we are.

There are five attendings who rotate responsibility for the ICN. When they’re on, they are the primary physician for every baby in the nursery (30 beds). None is ever on for longer than two weeks at a time and they’re often gone for 6-8 weeks before they appear again. While they supposedly consult with one another and pass along information on the patients, they all have their own opinions as to the best course of action, parameters for success and status of the babies. What this boils down to is that what Dr. This Week is doing may bear no relation to what Dr. Last Week was working on and that none of it matters, because as soon as Dr. Next Week comes on, the whole plan is out the window.

For babies who aren’t in the hospital for very long or who have issues with simple answers, this doesn’t really matter, but for a complicated and long term case, the consequences are different. There’s a huge lack of focus that filters down into the rest of the care team; the parents and the nurses are forced to play games to manipulate the situation; opportunities are lost and the hospital stay is extended. I firmly believe that this carousel of attendings contributed to her being on the ventilator for so long — it was not the only factor, but it had consequences.

But the lack of continuity isn’t just from the attendings. It extends all the way down the ladder. There are a half dozen NNPs who bear the primary responsibility for most of the cases (a rotating roster of Residents handle the rest), but no one NNP is in charge of a particular baby. A bare handful of the nursing staff have actual set schedules, while the rest of them are on at random and unpredictable times. It’s almost useless to pick out a primary, because it seems like half the time you don’t get them assigned anyway — or if you have more than one primary, you can pretty much guarantee they’ll both be on at the same time.

So twice a day we sit in tense anticipation to find out who our nurse for the next 12 hours will be. Will it be someone we don’t trust? Will it be someone we’ve even seen before? (Yes, we have been here five months and we are STILL getting nurses we don’t even recognize.) Will it be someone who hasn’t had Dorrie since August? And if any of those are true… we find ourselves in the fun fun position of trying to teach the nurse about our daughter and how best to deal with her without causing a meltdown on both sides. And then we get to wait and see if she’ll actually listen to us or fall back on her own habits, which may or may not be ideal for Dorrie.

Every day at rounds we sit and listen intently so that we can correct whatever misinformation is in the process of being spread today. It’s incredible how many details get messed up in the game of telephone that is the chain of command in this place. But this is the information that is being used to decide her care, and it really matters that it be known that she was at 1/10L O2, not 1/5L, she breastfed 4x, not 3, she had one major spell, not two. For example, when she was having trouble on the bottle and choking, we wanted her evaluated by the speech therapist. But somehow (and I know this is still the case in the minds of several of the team) her problem was communicated to the therapist as reflux (which she also has) and not swallowing related. Another week’s delay was the result. It is and has been exhausting to try to keep on top of all of this, but it has become increasingly clear that if we don’t do it ourselves, it’s not going to happen at all: no one else actually has her whole case in their head, because they are only involved with her intermittantly.

Posted by mom, under hospital crack, our little witch, trying to stay healthy