QUESTION: Hello! I work in a residential home with medically fragile infants. We currently have an 11 month old (7months adjusted). He is trach and vent dependent with many diagnosis’ due to prematurity including: pulmonary hypertension CLD, PIE

We are having many debates (speech/ nurses) on respiratory rates that are appropriate for feeding. Can anyone provide some guidelines that are based on research as the nurses are stating that his resting respiratory rate is in the 50’s therefore it is ok for his RR to be elevated during feedings… Help!!! I am on an island!!!

ANSWER: Given this was a 28 weeker based on his adjusted age, his longstanding respiratory co-morbidities from the NICU are most likely the biggest part of the picture still, even though now 7 months adjusted age. Did he indeed get the trach in NICU due to need for long-term ventilation, or were there any airway pathologies that might now preclude tolerance of an in-line PMV? When was the last time ENT saw him to assess airway integrity?
Often infants with a history like his may have multiple issues/co-morbidities that need to be considered regarding readiness to feed. I like to start with a recent airway assessment as I mentioned so you can discuss with the ENT his perspective on readiness to trial a PMV in line and to secure an order if team agrees. If his co-morbidities do not preclude a PMV trial, experience shows us that the inline valve can typically help wean vent settings in infants, and of course could also contribute to restoring subglottic pressure (for improved pressure gradients for swallowing – a key component of infant swallowing). It would also help him manage his secretions as he could then “feel”/sense the secretions. You don’t mention anything regarding his secretion management, which is a factor to consider, but I find it is often improved by a PMV if tolerated. Just feeling his secretions and then swallowing his secretions is a big learning curve for an infant like this and is a critical step along the way.
He has no taste and smell right now, which most likely he actually has never experienced, given that he most likely was vented and trached in the NICU. This is a big void for infants with his history. Being able to use his sensory system (taste, smell, touch/tactile) to “guide” the swallow will be critical for this infant whose oral-sensory-motor system has been altered for some time. Indeed, when he is truly ready (from multiple perspectives of readiness) to trial some tiny PO tastes (most likely of puree), my experience suggests the entire swallow pathway will be better supported via use of a PMV. Again if he tolerates a PMV, based on the original etiolog(ies) for the trach and current airway integrity. I always look to partner with ENT, Pulmonology and my RTs.
Regarding respiratory rate (RR), our RTs tell us that focusing on RR as a primary indicator is quiet limiting and does not take into account the infant as a whole, in particular both his current level of respiratory support (vent settings, Fi02 needs, ability to wean settings, trends over the last month or so, overall progression toward weaning, for example) and his work of breathing (WOB) both at rest and with activity. By WOB, I mean breathing effort – it is often a better overall indicator of physiologic stress than RR alone. WOB would include for example: nasal flaring/blanching, chin tugging, retractions (suprasternal, clavicular, pharyngeal, intercostal, substernal) – this increased respiratory effort, if present at baseline, suggests the “workload” required with breathing, even despite respiratory support, may indeed render the ability to organize breathing even with non-nutritive sucking precarious; the attendant “aerobic workload” is something he needs time to work through and learn to modulate with help during therapy. Being able to “feel” oral-pharyngeal airflow during non-nutritive sucking or oral play is in itself a step along the way to future PO.
Too often, well-intentioned caregivers who think PO feeding will be “fun” are not appreciating the complexity of the task with an altered airway, being hooked up to a vent, not being able to taste or smell (which they often don’t understand as sequelae from tracheostomy) and having a long history of altered oral-sensory-motor experiences, as well as other developmental concerns related to the need for a trach (i.e., gross and fine motor delays, altered postural control, especially in the head and neck, which can affect ability to feed), and other co-morbidities associated with being born so extremely preterm that can alter his overall developmental trajectory.
I know this response is much deeper than you expected, but so much to consider – RR is just the tip of the iceberg so to speak. You aren’t really on an island because we are all out here, each of us learning and at times struggling with similar issues, perhaps with similar patients or clinical questions. I actually like being in the “gray zone”, as I like to call it, where the answers are not clear but the questions often are. That is of course how we grow.
He is lucky to have you in his corner as you try to both protect him and offer him opportunities to grow and develop. I hope this gives you food for thought as you consider next steps. Your population of medically fragile infants is one of the most challenging.
Catherine