Thursday, July 24, 2014

Jude's bump and doctors update

Mike took Jude to his Pediatrician today and then to the neurologist for check ups. The Neuro said the cerebral spinal fluid leak isn't ideal, but it happens. They really believe Jude's body will heal the leak itself and agreed we should just watch him. That's good news and we will continue to monitor Jude and hope he doesn't need any further intervention on the matter. They also increased the Baclofen pump a tiny bit. They said they were very hesitant with how Jude has responded to go up any further, but they did want better tone than he has now.

To top off my month from Hades we received a letter stating they were decreasing Jude's nursing hours to 28 a week. This makes absolutely no sense and honestly seems like a failure on the deciding parties fault for not investigating Jude's case properly. They suggested a personal care attendant, but they cannot give breathing treatments, administer medications, handle controlled substances, and more. So I guess they think Jude can do it? So it will be a lengthy process but all of Jude's doctors are behind us and ready to step forward to get him what he needs. One even expressed her complete frustration with the system and the "lack of proper interest and care regarding children that truly need this service". We are very grateful for the care and services Jude receives. Without them we could not work and would be dependent. However, this just really came at a bad time.

So to move on to the next subject. Am I frustrated lately? YES! It's allowed. I also understand that everyone wants to help in some way, but that's difficult. I appreciate your kind words and your thoughts for Jude and the family. I learned a long time ago that it's okay to feel completely frustrated. I am tired because I don't sleep well. It's hard managing work and home. Dealing with insurance on Jude. Plus, honestly dealing with rude and obnoxious people that have absolutely no idea what's truly important in life just wears me straight the heck out. So would I like to run out into the street this week and yell my mother bloody head off? Yep! However, I have also learned that there isn't much you can do regarding those items you cannot control. So you just pick up the pieces, be thankful for what you have, and keep marching on. It's the way it works. So don't feel down if I seem upset or at my wits end. It's just one of those months.

Have a great day all.

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