Thursday, June 6, 2013

No Night Nursing

Having a son with special needs, he requires 24/7 care. Through his insurance he is allotted 8 hours of nursing a night. The reason he has to have someone monitoring him around the clock is because he has a trach (tracheotomy) to help him breathe and a J-tube (jejunum) for his formula feeding. Kaleb can have nothing by mouth. We let him have a very tiny taste once in a blue moon, like a little (tiny) bit of icing from his birthday cake. We have to be careful because he has micro aspirations. This is due to his tracheotomy, there is a flap that covers our esophagus so that when we swallow the fluids do not go down our bronchial tube to our lungs. Kaleb's flap does not close enough and small secretions can escape, going to his lungs and could cause further complications.
Because Kaleb requires 24/7 care, we have to have a nurse come into our home for Kaleb. This was very awkward in the beginning, trying to relax and go to bed was nearly impossible when a stranger is watching your medically fragile son. It gets better once you get to know the nurse and build trust. However, I have learned (the hard way) you should keep a professional relationship because, unfortunately, people can take advantage of your trust.
So, when a nurse is unable to fulfill their shift, usually there is no coverage. So then, it is up to me to stay up and take care of Kaleb. This can be more challenging and difficult when multiple nights are required and you have responsibilities during the day that will not permit you to rest. I heard once that interrogators will keep their prisoners awake, and after experience going days without adequate sleep, I can totally see how extreme sleep deprivation can be torturous.
On a positive note - Kaleb went to school today so I was able to get a couple hours of good sound sleep. It is both important for our mental and physical health. Lack of appropriate rest can result in various health concerns that can be very serious. I know when I do not have enough sleep it affects me physically by my symptoms of nauseousness and dizziness and mentally with irritation and depression. As caregivers it is crucial that we take care of ourselves.