Month: May 2015

Honesty at a price 

        I came across an uncomfortable situation last night whilst in hospital with my daughter.  It was shift change and all was ok, I hadn’t met this nurse we had before and as a long term chronic child parent you tend to know almost all staff. Anyway all was ok when she introduced herself and then the following hour It started  She came in to do observations and said oh I don’t need to be in here only every two hours so I will come in once every four hours, I said so how do you figure that’s ok? My daughter is internally bleeding and in high care ward so how is that ok. Can you double check with doctors?  On return she came in with the scheduled medications for that time and I noticed her hands shaking, she grabbed at my daughters stomach tube and cannula (drip) and wasn’t sure what to do.  My heart sank ! I felt instantly sick with worry .. I watched carefully waiting to see if she would …

Hard times 

Things went from great to worse so quickly. We had a great run for about five months with the seizures and it’s never ever been like that before.  My daughter had managed to come off the heavy morphine and Valium and things were getting so much more comfortable.  Then ……  Seizures start again and in a 24 hour period things change  Three seizures within six hours and then a big bleed in her nappy. Scary stuff black maroon tary red blood Poo. Large amounts.  We take her to hospital where more bleeds continue and on arrival hb count high 150’s the next day after three more bleeds.  Hb 90  Following day endoscopy where the camera goes down her throat to look at her stomach and just through and they can see inflammation but not enough to be bleeding that much from below. They then do a meca scan to scan the lower intestines and after an hour still no signs.  More bleeds and then  Her gastrostomy peg ( she is fed through a tube into …