Comments on Uncompromised Airways: Is it hard?

Becca, I appreciate the comment. Although almost ...

2010-07-12T06:50:34.072-05:00

Becca,

I appreciate the comment. Although almost all of my nursing experience has been with neonates, in a brief tour elsewhere, I was able to take care of a school-aged child with OI who does enjoy a decent quality of life. Initially, I hoped that my patient would be able to experience many of the same things. Because of my own experiences as a pediatric patient, I tend toward the overly optimistic side.

Unfortunately, without getting into too many more particulars, it is clear now that no one involved in his case considers my little man a candidate for bisphosphonates. Most of his providers feel, with his particular disease entities, that he's already outlived expectations.

I think that's a huge frustration that many of us feel at the bedside in the NICU: there are many times where we expend great effort prolonging life, when there isn't always a lot that can be done to address the quality of life.

Just to let you know that if he makes it through t...

2010-07-09T08:45:05.719-05:00

Just to let you know that if he makes it through this, hardest time, your little dude with what sounds like probably osteogenesis imperfecta may actually do okay. When he's a little bigger he'll be easier to handle safely, a Texas (‘condom’) catheter will cut down on those painful diaper changes, biphosphonates will help him to fracture less and he will enjoy periods of being painfree. It's hardest before they understand enough to protect themselves, I wish you could see him in high school with his powerchair and ventilator and aide one day - and yes, there is a real chance that he'll get there. It's not futile, what you're doing now, although I appreciate that it must feel like it.

Babies like your little patient have a real future now, and the outstanding supportive care that you and your colleagues provide is the launching-off point for all of that.

As a mommy who had to stand their and just stare a...

2010-06-09T12:35:00.520-05:00

As a mommy who had to stand their and just stare at my tiny baby (who should have been still cooking inside my body-a body that had failed him) I know how heart wrenching it is. My little guy is one of the great success stories but I can't even begin to imagine how bad it would be to have had him die in a surgery without ever having held him. I hope your little one made it through and that momma got to hold him either way. I'm sure you've witnessed it many times, but there is nothing like the rapture of finally getting to hold your baby. That's probably why you mention denying that special time is one of the hardest things to do. As the NICU parent, I never thought about what it must be like on the NICU staff. Thanks for that perspective.

--What about the little ones who never have a parent or anyone there to visit. The baby next to us never had any visitors. I thought that was pretty sad.

Glad you're back! I also work a level IIIC NI...

2010-06-01T17:50:53.515-05:00

Glad you're back! I also work a level IIIC NICU. We have a separate unit for the feeder growers, so it's all high acuity all the time. I say it's nurse's call for holding with the UAC. I don't, but that's me. Others will. I break other rules though, that's what rules are for, to be broken. If I break a rule I always tell the parents that it's up to the next nurse if they'll bend the rule. Things like letting a mom hold her twins together at the same time. Or letting the sibling see (not touch) the baby when they transfer to the level II NICU. It's up to you and I wouldn't think anything less of you for doing it.

I was a rule breaker too. It is just my personalit...

2010-06-01T08:53:08.588-05:00

I was a rule breaker too. It is just my personality, I guess. But, yes that is hard to decide. Hardest I think it the person in pain who cannot tell me he does not want me to intervene and his pain increases and I cannot help. The helplessness is probably the worst.

I no longer talk just about work. Perhaps get a hobby? Carve ducks or something?

I'm a rule breaker, personally -- let the momm...

2010-05-29T11:54:03.333-05:00

I'm a rule breaker, personally -- let the momma hold him.