Unfortunately, this means I will be unable to do any of my son Joey McCluskey's daily care for 6-8 weeks after my surgery. The surgeon said that I would be laid up for approximately 3 months but I am hoping that is not the case. I have help with Joey’s care over night but we desperately need help during the day. I am Joey’s primary care giver. Joey’s care requires a certain level of training, in which I will have to train the nurses that will be coming in as some of Joey’s procedures for care are not standard practice.
The Government Nursing Agency will only provide a maximum of 24 hours of funded care per week, no more. Unfortunately, Joey needs 24 hour care, as his condition is very unpredictable. Joey has what is called VACTERL Syndrome . To date so far, Joey has had over 200 general anesthetics. Joey has quite a few issues but the main day to day issues he faces are incontinence and personal care. Joey’s limbs are also deformed,so he can’t do any of his own personal care. Examples being, toileting, bathing, dressing, making himself something to eat, feeding himself etc. Joey needs to wear pull up diapers, but because of his limbs, he is unable to do his bathroom hygiene by himself. He also has a special toilet routine twice daily that involves using his cecostomy tube and a kit that the nurses have to hook up if I am unable to do this. Most day to day things we take for granted, Joey needs assistance with.
Despite all the problems our family lives with and continues to go through, we have never asked for this kind of help before. All donations received, will go directly towards private nursing care for my son Joey. The amount we are asking for may look like a lot, but Private nursing starts at $40 an hour and goes up from there. I have found a nursing agency that will send PSWs and RPNs in for the 12 hrs a day at a cost of $300.00 per day.
Please feel free to contact me with any questions, whether it’s concerning my surgery or Joey’s condition/ care. I am happy to answer any and all questions.
I would like to thank everyone in advance for taking their time to read this and for all the support we hope to receive through social media.
Sue and Joey McCluskey
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