bimalc

Can you clarify if you are referring to premature infants with intact bowel or post-surgical short gut/intestinal failure patients? Your options/goals are somewhat different in each setting.

1-4 ug/kg/h infusions, usually the lower end of that spectrum, titrating by 0.5 to 1 to effect. Obviously respiratory depression is an issue, but these drips are almost exclusively used in intubated patients so less of a concern. Less uniform practice in my group, historically have used methadone or morphine to come off high dose infusions, but we're increasingly using dexmedetomidine for much the same reason/effect as @frvg666 uses clonidine when coming off larger exposures.

Would you care to elaborate? I found your comment the most interesting one aside from the actual clinical narrative that is

Difficult to say without the rest of the relevant parameters on both the vent and the baby, but one has to ask why you aren't on CPAP at that point.

With the humble acknowledgement that I have no idea what the state of clinical informatics is in your work environment, I have to wonder if the use case(s) you envision are not available natively or with some minimal repurposing within your electronic medical record. Depending on the amount of turn over on your unit, the risks of missing patients coming on or off teams may be significant when using auxiliary information systems not tied to hospital census. There may also be significant risks to data security and privacy breaches if you're operating what amounts to a shadow medical record. Finally duplicative data entry may lead to discrepancies across data sources as well as end user resentment at the extra work. For the past decade or so, I have worked in units where the hand off is generated from the medical record (with the exception of 2 level III units that have since moved to handoffs generated by the medical record system). It has the virtue of always having accurate census, bed space and order information. It has the vice of almost always having too much information as well as requiring us to be dependent on hospital IT to update the format/content. Please ignore my ramblings if you're considering this for a unit in a setting with no functional electronic medical record system.

Homozygous/heterozygous?

Are you able to elaborate on the chest CT and/or share images? I find it quite hard to fathom how a CXR showed total white out at the same time that a chest CT was completely normal. Also, more clinical information would be helpful: blood gases, response to surfactant, vent settings, etc.

Regarding your first question, if you're going to use raw Cr values, please remember that early Cr reflects mother more than baby and that protein malnutrition causes SCr based measures of renal function to over estimate function. In practice I find the various measures used in the AWAKEN studies to be more useful: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5933049/

If you're going to run that much fluid at this age you will need to keep an eye on Na and volume status. As the skin keratinizes, lung disease evolves, renal concentrating ability fluctuates and you're possibly trying to coax a PDA to close you may need to be quite nimble in your goals for the day. In my experience, I am good about proactively considering fluids as we come out of the DR, but could perhaps be better with the 1-2 week olds who still need IV fluids/nutrition.

The data is fairly clear that routine checking of gastric residuals is neither sensitive nor specific for serious pathology (aside from possibly enteric tube placement). The practice is associated prolonged time to full enteral feeds which itself is associated with a number of downstream consequences (increased central line days, extrauterine growth failure, LOS, etc.). While the Cochrane reviews indicate these secondary effects are uncertain, the preponderance of evidence favors either no difference or favors not checking.

Is there an error in the patient age or diagnosis? I can count on one hand the number of 3 year olds I have cared for in a NICU and collodion babies shed their initial dermatological findings in 1-3 weeks depending on etiology (at which time fluid management is much easier).

My current units do not admit babies who have been home for exactly the reason @Stefan Johansson said. However, I trained at two children's hospitals that did admit such babies. The mainstay of therapy is supportive care: positive pressure as needed, vigorous airway suction, recognition that apnea is common in RSV with neonates and that intubation can be more challenging than 'typical' neonatal intubation because these patients are often much larger than what we are used to (and thus good access and premedication for intubation under controlled conditions is VERY beneficial). Of the listed inhalation therapies hypertonic saline can perhaps shorten length of stay by <1 day. When the diagnosis is known (and assuming this is a previously healthy term baby) there is little indication for albuterol/atrovent (except maybe albuterol for bronchospasm after hypertonic saline). Sorry, not a lot of data, just anecdote.

No, but I feel the need to point out that (part of) the rationale for acetate in PN for premature infants is not for base infusion, per se, but rather to displace chloride and avoidance of iatrogenic hyperchloremic metabolic acidosis which is obviously a completely different problem than the bicarb infusions discussed in this thread. Contrary to the presented data that bicarb infusion is useless, there is a reasonable amount of data (though less for premature infants) that hyperchloremia is quite harmful. I'm not aware of any data arguing against acetate in parenteral nutrition for displacement of chloride. My experience is that it is almost never required and the handful of times I have done it I doubt that it is of any value. On the contrary, I have found that with appropriate fluid/volume management, aggressive use of acetate in parenteral nutrition to limit chloride infusion and good renal protection, metabolic acidosis is easily managed in all but the most extreme cases.

I cannot access the full text from home, but it strikes me that intermittent hypoxia is, at best, a surrogate for the clinical indication I and my colleagues have done trials of post-pyloric feeding in this patient population. As you say, practices vary, so perhaps I'm an outlier, but I use post-pyloric feeding for the very specific subpopulation of BPD patients for whom I am trying to modulate the mode of support (eg wean the baby who is 'stuck' on a low level of CPAP or a HFNC from positive pressure to a low flow canula that can be weaned on an outpatient basis). These trials of post-pyloric feeding typically run ~1 - 2 weeks and the outcomes we follow are (in order from least to most important): intermittent hypoxemia, baseline FiO2 changes, changes in level of support. I agree that those who seldom or never resort to transpyloric feedings need not change their practice based on this study, but I'm not sure this trial addresses the way transpyloric feeding is used in my part of the world.

Not routinely, but for high risk extubations we often coordinate with ENT and make plans for things like race epi at extubation to Heliox. I've also used it many times as rescue therapy when there is post-extubation stridor and I am trying to buy time for airway steroids to kick in.