[Dysphagia] chylothorax

[amy_beyer at yahoo.com (amy beyer)]

hi there. i have only worked with geriatrics, not peds and certainly not in the nicu. my niecewas born in late jan and is five months old. she is still in the nicu (hasnt come home yet). she has chylothorax and a leak in her thoracic duct. her thoracic duct  remains unpaired after four attempts at surgery.her doctor is hoping for a self-correction. she was on a vent for two months but has been off of it since april. . she has a tpn and an ng tube but is only being fed 17cc of formula (every hour) (pregestimil)at this point. (40cc = 1 oz for comparison). this is done through continuous feed (ng tube), as her lymphatic system cannot tolerate bolus feeds at this point. they are hoping to increase her formula more (raise 1 cc each day, given she tolerates it well) but each time they have done this in the past, her body cannot tolerate the extra fluid and she regresses (this is the most she has been on in the past month or so). she has significant oral aversion and a strong gag reflex to
 any oral stim. she has not had continuous slp, pt or ot services until now b/c she has been on such a rollercoaster with feeds (being able to tolerate, etc) and had chest tubes in and out for so long. each time the chest tubes have been in (to drain excess fluid), her doc dc's services. in the past few weeks, she has had more therapy (st and pt at least 3x a week). speech is working with oral aversion (using lollipops, flavored lipgloss etc). does anyone have any experience with a case like this and do you know prognosis re: po, reducing oral aversion, connection to speech development, etc? a doctor who is not their regular doctor said some babies NEVER eat (po) and her (main doctor has NOT said that at all. i think she will need more therapy (speech and other) as she starts to tolerate feeds, etc and that she will benefit tremendously from it. the main goal is to get her with po feeds that she can tolerate without having regression she has in the past. having tpn in long term is a
 risk to liver, i believe. so they want to get her off that as soon as she can. anyone have any insight or know where i can fid some other resources to help? also, are there any parent dysphagia boards for pediatrics i can direct her to? thanks so much. any tips, insight, advice, etc would be most appreciated. 



Amy M. Beyer 
www.thebeyers.com