When a young mother has her first child it should be a time of changing your first diaper, long nights, snuggles, sitting up and lots of joy. For my sister and her newborn Sylas it has meant six months of living in the ICU. Sylas was at a check up with his nurse when he began to turn blue, with the nurses advisement he was brought to the emergency room and from there transported to the best hospital in the state. My sister lived in his PICU room for several months while several teams of doctors ran test after test on my little 5 lb nephew. After these long months of continual tests and surgeries in which they put in a breathing tube into his little throat and a feeding tube into his little belly they still had not figured out what was wrong with Sylas and decided since my sister only had medicare that they would be shipping Sylas off to Albany New York to an old Childrens Hospital which as of last year had been run by Nuns. Since being transferred the staff have forgotten to up Sylas feeding level so he was not putting on weight and had a blood sugar crash. His symptoms have not gotten better and due to the holiday season the staff continue to suspend my Sisters training so she might be able to learn how to care for her baby herself and get him home. Mean while she had been promised the ability to stay in her childs room as she had done in the PICU or a room at the local Ronald McDonald House. However her first few weeks at the RM House she caught one of the staff going through her bags, and when she contracted the flu from one of the nurses (who also infected Sylas ) she was told she could not stay in the hospital or in the house, when healthy she returned and was told that she no longer had a room available and that the Ronald McDonald house did not give rooms to patience at the hospice center Sylas was staying in because the children require usually long term care which the RM house did not want to provide to parents. My sister was barely coming off of maternity leave when Sylas was admitted to the PICU, she had to give up her job so she could be with her sick little boy, she is without a car so she relies upon my mom, myself and Sylas other Grammy to get her to appointments for Sylas and other errands. Medicaid is dragging their feet on important diagnostic tests for Sylas to find out if he might have brain damage from the times he has turned blue from lack of oxygen or if he might be suffering from seizures and other types of tests. My sister is working hard with in the systems provided to her but she still needs a home for Sylas which she does not have now, and one which is handicap / emergency accessible, the ability to obtain two 71 hour home health nurses to help her care for Sylas, medical equipment for Sylas basic care, like his breathing and feeding machines and other medical goods and a car so that she might be able to take her son to appointments and run errands herself. There is so much they need and frankly without help they will continue to be at the mercy of the system. So I ask you, my followers, as a Big Sister who raised my little sister, who changed her diapers, taught her to walk, to talk, potty trained her and braided her hair every day for school, and as an Aunty who loves nothing more than singing Rock a bye sweet baby james to her little nephew who has just started to live to please help any way you can. If you just share these links so others know about our little Buggy man Sylas and how he is struggling just to live, to breath, to eat and gain weight, how every laugh and smile is precious to us, my family truly would appreciate it.
www.facebook.com/pages/Prayers…www.gofundme.com/ma3jfk
