Problem-Solving with Catherine

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

Problem-Solving with Catherine

Question:

I work with a 4-month old baby with lots of gastro issues on G-tube. He has had a nissen fundo surgery. Originally NPO. I gave mom strategies for oral motor but he has a great suck pattern and no visible oral motor issues. Also gave strategies for environmental modifications while feeding. He is now clear for only puree. I dont know if I should continue seeing him and how to proceed if I do. I have little experience with babies so any or all suggestions are welcome. Thank you!

Answer:

Sounds like a challenging patient. Since you have little experience with infants, this would be a great opportunity to partner with an SLP locally who has treated infants. We don’t know much about this infant except that he is 4 months old. To fully understand what is going on, we need to gather data, including his history, and combine that with what you are seeing to then be able to complete a differential. Some of the history you can gather from the parents, but I would also request records from the referring physician. We would want to know for example: was he born at term, or post-term or was he a preterm infant? What do we know about his birth history? Was he hospitalized in the NICU after birth? If so, how long was he there? What were his medical problems when he was there? Did he require oxygen? Has he had any other surgeries other than the G-Tube/Nissen? Are there still medical problems the doctor is sorting out or following? Why did they place a G-Tube? Did he have a swallow study and what did it tell us about his swallowing physiology? Is he otherwise developing normally for a 4 month old (posture, head control, UE and LE movements/control, swallowing saliva, getting hands to mouth on his own and appreciating that, accepting pacifier, visually alert/engaged and tracking, starting to make sounds?) It may be hard for you to fully assess these developmental parameters, as well as oral-motor integrity, and an extra set of eyes from another SLP will be both helpful and important.

From what you have told us it sounds like reflux is a part of the differential but that alone is unlikely to, though could possibly, lead to the need for G-Tube feedings. It is possible that, given he is to feed only purees, he may have shown alerted or impaired physiology with liquids. The altered or impaired physiology, if identified, should be correlated with an etiology in the swallow study report. Just knowing he “aspirated” won’t guide our differential and plan, as we would want to know what was the nature of the bolus misdirection (to the nasal airway? to the laryngeal airway?) and why the bolus mis-direction occurred, if it did; what they recommended for him at that time. That then drives a plan of care and suggests strategies to specifically address the problems identified.

While some infants do have oral-motor problems that contribute to the need for G-Tube feedings, there can be multiple co-morbdities, or problem areas that contribute. Knowing more about his medical history would help uncover or elucidate these factors, and they are critical to our assessment and treatment plan. They actually form the context in which we interpret our data, i.e., what we observe clinically and what the family tells us about what they see. You mention that he has no visible oral motor issues so then we want to look deeper and broader at other systems that underlie effective feeding, including GI, respiratory, postural, neuro, sensory, for example. Information about his history should guide you toward these suggested domains or away from them.

It is wonderful you reached out to this list serve, but as you can see his presentation and what to do with him is much more complex than can be fully addressed through the list serve. Perhaps use this an opportunity to learn and build your skills, and seek an SLP mentor to work alongside you and guide you.

Not sure if that is possible where you work, but I suspect not or you would have tried sought a colleague’s help.

It takes a clear objective sense of our own limitations and humility to think about not continuing to see a patient for whom we feel unprepared. I think as I read between the lines you are at that juncture and are to be commended for that tough call. Each of has been there and let’s hope we have all been as willing to ask questions and recognize the need to respectfully send the patient to another SLP, whose current skill set is a better match. Were this your infant with feeding/swallowing problems, you would want his therapist to make a decision that is in the infant’s best interest.

I hope that this has been helpful.

Catherine

Problem-Solving with Catherine

Question: I need help brainstorming possible etiologies for chronic vomiting/regurgitation with a 3 year old.

Medical hx is significant for 36 week prematurity, hypoplastic left heart syndrome now s/p Fontan on 6/16. On 6/18, pt w/new onset left side weakness; imaging found hypoxic injury and watershed infarct. PMH also significant for submucosal cleft palate and GT dependence. Chart review revealed ongoing ST to address feeding issues from infancy, including oral aversion and decreased oral motor development, both now resolved. Parents report pt is interested in PO feeding and will put all textures in his mouth but chews them and pockets rather than swallowing because he is afraid of vomiting. Assessment revealed mild OM weakness but adequate lingual lateralization and chewing skills. Initial PO trials were with preferred foods (smooth puree and water via straw). After very small volumes (less than a teaspoon of each), pt regurgitated the food/liquid which subsequently expelled everything else he had “eaten” via GT up to 2.5 hours earlier. The gag did not happen until after pt had safely swallowed on both trials (separate events with puree and liquid). Parents report that this happens several times a day and that pt also vomits without PO intake (just GT feeds) but that is less common. Pt has had several MBSS which revealed functional pharyngeal skills (oral skills were lacking in one but that was some time ago). The only UGI pt has had was when he was an infant, as part of the work up for GT but they presented contrast via NGT and only viewed stomach and beyond. Therefore, today, I asked for an esophagram to rule out structural or functional issues in the upper GI sections. This test was negative.

These parents are so frustrated and don’t know why their son is vomiting all the time. What I witnessed did not appear to be related to sensory/behavioral (texture aversion) or swallow dysfunction. I was wondering about UES dysfunction or esophageal pouch/diverticulum but the radiologist did not see evidence of those today. Any suggestions??

Answer:
There may be a variety of GI issues to consider as part of the differential. You don’ t mention if he also received a Nissen at the time in infancy when his G-Tube was placed; if so this may be part of the puzzle, especially considering the vomiting after G-Tube feedings. His diagnosis of HLHS and multiple surgeries, and subsequent post-cardiac surgery GI complications are quite common, as Shaunda suggested. The lower branch of the vagus can wreak havoc with many of our babies and children post-op. Given his history and pre-morbid feeding challenges (oral aversion, oral-motor problems), there may now be an exacerbation of those premorbid challenges. Given that he must have had some kind of post-op event on or prior to 6/18 that resulted in a documented hypoxic injury and watershed infarct, I wonder if there may also be some alterations in pharyngeal and/or upper esophageal function that may be also part of the etiology. What I mean is that even though there is a strong case for GI issues as a part of your differential, there are apparent recent neuro ones too that, along the swallow pathway, may alter both pharyngeal and upper esophageal (especially UES) swallow function. You mentioned he has had several swallow studies but has there been once since the onset of left sided weakness and the watershed infarct and cardiac repair? This would be a great opportunity to objectify both pharyngeal and upper esophageal swallowing physiology with at least the puree and liquid he clinically appeared to swallow well. His complex history and the recent post-op event suggest to me the need for a current instrumental assessment. Because the UGI is a moment in time, and that his is such a complex presentation, a test result such as a “negative UGI” may not tell the whole story. Perhaps during the swallow study, you may also capture an incidental finding related to GI function, and given the focus on dynamic swallowing in the swallow study (versus what they may focus on in an UGI), you may be able to gather needed data about both pharyngeal and upper esophageal function. The combination of his multiple co-morbidities, and their interaction, is likely quite complex, and the data from a swallow study may help inform the entire team’s perspectives.
Catherine

Indwelling NG Tubes

In community-based early intervention, children/infants with indwelling NGTs (nasogastric tubes) may come to us for services. They may have struggled for extended periods of time learning to PO feed while having NGTs for months. By the time we see them, there may already be onset of early aversive behaviors set in motion. Our job then is often to then unwind the negative learning. I recognize as I travel the US teaching that discharge to home on indwelling NG tubes is getting more common, including bridled NGTs and I am concerned. In my experience, those infants/children for whom this is a consideration clearly require the interdisciplinary perspective which the attached paper advocates.

A common concern as pediatric therapists is the potential impact of indwelling NGTs on the oral-sensory -motor system, both in the short term and the long-term. This perspective is shaped by those infants/children whom we follow after the decision is made and often present with sequelae from a well-intentioned plan. The challenge is always the risk-benefit ratio for each individual infant/child. This paper does a good job of articulating the importance of looking at the bigger picture. That is it can help the team, especially related to co-morbidities, to better profile those infants/children whose feeding issues are likely to truly be “short-term” versus thus whose medical history and co-morbidities suggest a more enduring feeding/swallowing problem. I hope this article informs your team’s practice.

NG-tube vs. G-tube

Problem-Solving with Catherine

Question:

What are your thoughts therapeutic taste trials? We are a level 3b NICU. And
have many babies with multiple medical complexities. We are beginning a
therapeutic taste trial protocol for babies who are over 32 weeks PMA, have
a nonnutritive suck, and physiological stability. The idea behind this is
practice swallowing for babies who are yet able to bottle feed due to a
number of factors but mostly babies who are on too much oxygen support (1.5
liters of hi Flow or greater)

I have some concerns especially regarding babies who are post PDA ligation
and we are receiving “encouragement” from physicians to begin this protocol
on babies on bubble CPAP. My obvious concerns with PDA ligation is the
incidence of paresis to left vocal fold and CPAP from my understanding
maintains positive pressure for open airway which worries me for poor airway
protection/open airway during the swallow. The bolus give is .05ml-.2 ml
increments. Also what are your thoughts on using sterilized water vs
breastmilk/formula? we seem to be giving them less than what they get from
“oral care”. Any help will be greatly appreciated!

Answer:

I think this could be supportive provided the therapist drives the plan
(once the consult is ordered), and that careful attention is given to
physiologic stability and infant engagement during all oral-sensory-motor
experiences and with pacifier dips. I would in general not be offering
“nipple” delivered boluses at 32 weeks PMA; however, even at 33-34 weeks
PMA, each infant’s unique history, co-morbidities postural control and
current level of support needed, as well as baseline WOB and RR would all
together best determine relative risk and how to best proceed. Many positive
experiences for readiness can be part of therapeutic interventions prior to
offering a nipple for PO feeding.

Infants s/p PDA ligation are highly at risk d/t the typical respiratory
sequelae associated with having required a ligation. A scope by ENT has been
advocated in some recent papers (search Google Scholar) suggesting many
infants are asymptomatic post-PDA ligation surgery despite having true vocal
cord motility sequelae and therefore scoping should be considered to assess
the airway integrity.

I think MBM is always better than sterile water or formula – more sensory
load than sterile water and a more normal oral-sensory-motor experience. No
one has studied it to my knowledge but I suspect that if traces of MBM are
micro aspirated, perhaps the lungs will better tolerate MBM than formula.

I hope this is helpful.

Catherine