Im starting to just loose it. Just met with a hospital representative to get him transferred. This dr. opened him up again last night and didnt replace the shunt as promised and closed him up again! He moved his abdomen tubing and said it should help I knew right away that wouldnt help & demanded WHY he didnt replace the shunt as promised. He just shrugged and said time will tell but this should work. Twice hes had brain surgery, been peeled open and closed up with no improvement. The shunt is a device consisting of a mechanical pump & a drainage tube!!? The tube in his abdomen is only held by a couple of stitches and can move around when muscles move. So basically, in a surgery he dix something (reposition a tube) that Will could do wrestling around with his brothers!! Shouldnt the Dr. Know the workings!? The ONLY reason I agreed to let him do the second surgery is he said he would simply put in a NEW shunt. I thought, ok, If its not working and he doesnt know why, at least if he replaces it like we were told, it would work. He didnt!? No answers. No pediatric neurosurgeons here AT ALL. I have to advocate and get Will moved to Dornbecker ASAP. Hes facing BRAIN DAMAGE due to this pressure. This is serious! Will is weak, hasnt eaten a meal in days, hard for him to walk unassisted, has had two surgeries in two days! Do you know how hard that is on a little body?!? This momma bear is foaming at the mouth and Im supposed to hear by 10:30. Im tempted to disconnect the cables and drive him myself but I was warned that would be really bad and I could be putting my child at risk which would be harming him!? But letting him have repeat brain surgeries with no results, letting the Dr. TINKER in my sons brain with no real solutions is ok?? The pressure is pudding is left eye out and down, his headache is being barely controlled by pain meds, Will just broke down bawling this morning. Hes exhausted, in pain and going on three days without getting food, or having his ventricles properly drained. Im just sick over this. Please pray Dornbecker takes him!! I guess this is a red tape issue with hospitals. Dornbecker has a team of pediatric neurosurgeons and I feel confident if I can get him there, they will at least know what to do.
Posted on: Fri, 25 Jul 2014 16:19:42 +0000