A little section of the letter JoJos surgeon wrote to the state requesting approval for nursing care...Explains where he is at. And now he is getting even worse. Not tolerating even 40 ml of food a day. Please pray for him. Josiah has complex medical needs as a result of a genetic duplication syndrome (MECP2) and the many conditions that have resulted from that. These include developmental delay, sleep apnea, gastroesphageal reflux, feeding difficulties with suspected intestinal dysmotility, stooling difficulties, concern for seizures, von willebrand disease, and neurogenic bladder. Also associated with his syndrome, he has difficulty controlling his body temperature and is more susceptible to infections. Josiah needs skilled nursing care because of the constant attention he needs to keep him alive and well. His current needs include monitoring adbominal distenstion and feeding tolerance at least hourly, with adjustment of the rate and type of feeds infused. His gastrostomy may be vented or clamped, and the output must be carefully recorded so that it can be replaced with iv fluids ( he will not tolerate the additional volume in his feeds and was becoming progressively dehydrated due to the need to be constantly vented). He now has a PICC Line to allow for these replacement fluids to be administered several times each day, which requires a trained caregiver, both to calculate the appropriate replacement and administer it, along with the proper care of the PICC line to keep it patent and prevent infection He requires administration of a rectal glycerin suppository as least twice a day, as well as rectal venting/tube to help him pass gas. He will not pass gas or stool without these maneuvers. He also requires catherization several times each day, as he does not reliably urinate on his own spontaneously. Due to frequent needs, as well as a bleeding disorder and increased susceptibility to infection, Josiah needs skilled nursing care in the home to assist his parents, as this is more than any parent can be expected to do alone. He requires constant attention and educated decision making to keep him alive and avoid excessive hospitalizations.
Posted on: Wed, 31 Dec 2014 01:58:58 +0000
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