Where do I begin?
First of all, the consulting neurosurgeon was very nice, very professional and gave us the answers we needed.
Kiereney is not a candidate for a ventral peritoneal shunt(in the head). Her ventricles are very small where the shunt would have to go in her head. He said snaking a shunt through the ventricles in her head would likely end up in a brain bleed and this option should only be used in a life and death situation.
He said that when she was in the hospital in November having a cisternogram(running radioactive dye through her lumbar peritoneal shunt to see if it was blocked) and they went to load the dye into her spine and they got three dry taps(three times they entered her spinal canal to obtain fluid to load the dye into and found no fluid) AND the lumbar peritoneal shunt was determined to be open and free, something should have raised red flags that there was a problem...
He said that a programmable shunt SHOULD HAVE BEEN PUT IN DURING THE ORIGINAL SURGERY. He also said that the neurosurgeon DID NOT SEND THE FIRST PAGE TO HER OPERATIVE REPORT SO HE COULD ONLY GO ON WHAT WE WERE TELLING HIM AS TO WHAT KIND OF SURGERY SHE HAD.
As far as overhydrating her and over caffeinating her(the original neurosurgeon's solution to her headaches after surgery) he said it would be like trying to fill up a balloon with air that had a large hole in it. Her current shunt is draining her dry of spinal fluid and no matter how much we hydrate her, it isn't going to help.
So...he is sending a letter to the original neurosurgeon and telling him he needs to go back in and add a programmable shunt to Kiereney's lumbar peritoneal shunt so the pressure and how much spinal fluid drains from her can be controlled.
The neurosurgeon we saw today only does VP shunts.
So the minute we stepped out of the office I had the original neurosurgeon's office on the phone telling them that they referred us and we were being sent back to fix the problem. She argued me up and down that Kiereney HAD a programmable shunt to which I said, "Then why did he refer me to this 2nd neurosurgeon?" and suggested she pull Kiereney's chart to which she came back to the phone and said, "Oh, I thought she had a VP shunt..." I told her we needed an apt. to let him know what the 2nd opinion neurosurgeon said and that something would be done and she said, "How about Monday at 2?" Usually it takes 6 weeks to get in to him. I think she realizes that they royally screwed up and wants to get this taken care of quickly before I hire a lawyer.
No amount of money can compensate Kiereney for the 5 months of pain because the programmable shunt was not put in in the first place and I'm not a sue-happy person. But I've been TELLING him for THREE months that there is a problem and I think she's draining out too much spinal fluid causing the headaches...
Today there is no glory in being right.
Thank you for all of your support and prayers. The words seem to jump in my mouth that I needed to ask the neurosurgeon and the neurosurgeon was so kind to Kiereney saying, "My intern has already talked with her and I'm not going to repeat what he did because she is in so much pain, I just want to talk about her condition and let's get her out of here and home." I know you had angels there with us today.
Will follow up on Monday after we see Neurosurgeon #1 again. I hope they can get her into surgery this coming week so she can recover and get on with her life. She interviewed for the CNA training yesterday for 1.5 hours and feels she has a good chance at one of the 10 slots open. We will find out on Monday.
Grandpa is at a new nursing home...he thought he was going home. It just breaks my heart that he is having to go through this mental abuse. She had him sign over all his stuff to her so she could get Medicaid to pay his nursing home bills. How does she sleep at night?