Tuesday, June 1, 2010

Like the energizer bunny....this boy keeps going and going and going

So when Vance turned two months old I figured it was time to stop treating everyday like his last.  We had to stop by passing things he needed like immunizations, well baby visits, etc. Just after his 2 month check up he had a high fever 103. I did what I would normally do, I called the pediatrician's office.  When they said it could be up to two hours before I got a call back because it was the weekend, I decided to call hospice.  The nurse on call said I could just give him Tylonol.  She sounded like she didn't know what to do, floundering when telling me what dosage to give him, so I wasn't very comfortable with her advise. Plus I didn't want to spend the weekend with a sick baby getting sicker until we could see someone on Monday.  Finally the Dr's office called and said we should get him to an ER babies that young shouldn't be having a fever like that. AHHH!!! I knew it! Stupid nurse! We took him to MUSC as usual.  4 hours later..yawn....we found out he had a UTI, which is not something 2 1/2 month olds normally get. It meant there was potentially an issue with his kidneys and/or bladder. More tests. But it burned me up even more with hospice. They were just going to let him get sicker.  On monday his regular hospice nurse called and said there was an issue with us taking him to the ER.  Hospice is not done that way. And if I took him back to the cardiologist there would be an EVEN bigger issue with that. Well it didn't take much for me to see that hospice was not in our best interest. They were not concerned about helping us care for Vance.  They were just collecting money while waiting for him to die!!  And I wasn't about to just sit by and let him die from neglect.  His heart giving out was one thing but anything else that was within my control to take care of was going to be taken care of. DAMN THESE PEOPLE ALWAYS DISCOUNTING MY CHILD.  I know he isn't suppose to live but WHY can't we treat him like he still is until he isn't anymore!
That was probably the turning point for Vu and I.  We weren't just going to let Vance fade away.  I canceled hospice the next day and they were still trying to weasel money out of us by not filing the papers even after me telling them I didn't want them. We made the appointment with cardiology.  It was going to be a bit of a wait, but Vance had already held on this long, what's a couple more weeks?  At that visit we got the most wonderful news.  Vance's PDA -ductal artery was for all intensive purposes closed and he was still doing good.  This was the thing we had thought was keeping him alive and now I'm told he's been doing this on his own the whole time.  More than likely that episode the day we brought him home was it closing. Even our cardiologist was all smiles. Vance was strong enough to have the surgery if that was what we wanted and with him not being ductal dependent it would be a much easier surgery for him to recover from.  She said the only better news was if the left side of his heart grew!

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