My name is Randy and my daughtet, Hayley is 22 years old. She has many medical issues including mitochondrial disease, hyponatremia, dysautonomia, gastroparesis, dysmotitliy, hashimotos thyroidits, ehlers danlos syndrome, classical type- there are more, but this will suffice for now. At the moment she is inpatient at the Children's Hospital of Philadelphia- she has a very low white blood count, very low ANC and has had several clots in her arms and chest. She has a PICC line in her left arm, and does have a clot in it, but they are trying desparetely to save it due to the fact that she has no safe upper body access right now. The consensus is, that despite being on TPN for 3 1/2 years, we have to wean her off of it and try and use her j tube for feeds and try and get her to eat enough and get enough fluids to sustain her. No one has been able to figure out why her counts are so low- it does not appear to be medicaiton related and she has had two very virulent line infections in the last two months.
To make a long story short, does anyone have any suggestions on moving toward tube feedings. Hayley has never been able to tolerate much through her tubes- it causes a great deal of pain, nausea, distention, etc... Right now she is on 15cc an hour of 1/2 strength elecare diluted with pedialyte. They will not let her leave with her PICC line as long as her counts are down and we really need some help to get things moving-
Thanks so much,