Caringbridge Update

We’ve said it before – the right nurse can make all the difference.

Last week Sue worked on Sam for the first time. She seemed nice, one of the more pleasant nurses that have been on him. Yesterday, she was back on him. She talked a lot about how he had grown so much and was way more alert and interactive than the just 3 days earlier. She made such a big deal about Sam and showed a sincere level of interest and affection for him that it warmed our hearts and we decided she was a nurse to cultivate. As it turns out, she felt the same way about us (read: Sam) and she was the one to conspire with his primary to schedule themselves on him to the exclusion of the other nurses in the department. Since then, we have found Sue to be a conscientious caregiver with almost as much interest in having a good relationship with us as in Sam’s care.

Today we were talking with Sue about how it might be nice to try a trial run with him and put him on on-demand feeding. We think that Sam has shown a pattern where, when we wake him up ourselves, that he never fully wakes and has poor feeds. Contrast that with times when he wakes up himself and he’s a bottle-feeding rockstar who should tour the country and give concerts of feeding performances for poor feeders everywhere. So we started feeding him today and the next thing we knew, Sue had gone and gotten the nurse practitioner, explained what we were thinking, and convinced her to go for it. She then disappeared again and when she returned, she let us know that she had just made sure that the order for his feeding had been changed so that the night nurse would know to feed him whenever he woke up and looked like he wanted to be fed. Sue’s a nurse who gets things done.

Now…lest you all get too excited – Emily and I have discussed it and we’re not expecting the world. To be honest, I would be floored if the next 24 hours were an unqualified success, but I think that it is going to give us good insight into his remaining issues and where we can best support him as he works on his feeding.

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