Well I have always been a complicated woman when it comes to anything medical related and today was no different!
Today was supposed to be injection day but after getting in the radiology procedure room things took an unexpected turn. The doctor got my port accessed right away with no pain. With Spinraza they have to remove 5cc of spinal fluid and replace it with 5cc of the drug (Spinraza), so the doc tried to draw the spinal fluid but was unsuccessful, so they tried to flush with saline and it wasn’t flushing properly so the neurosurgeon was called in for a consult. He came in and tried to draw back the spinal fluid and tried flushing with contrast to see if everything was where it was supposed to be, with my rods it was hard to make out what was happening so it was decided that I would get a CT scan.
We go to CT and they inform me that I need to lay on my stomach for the scan, which with a trach and g-tube I haven’t done since I was a baby. It was awfully uncomfortable but we got it done! The scan showed that the catheter to my port is in the right spot in my spinal column but that it had a leak outside of the spinal column meaning there was a hole in the catheter. The only way to fix the catheter is to have surgery and replace the catheter, so I go back in for surgery tomorrow morning (Tuesday 6/4). The plan right now is that the surgeon will do the first injection during my surgery!
Everyone please pray for an easy procedure tomorrow with little recovery time. My sisters wedding is next Friday and I don’t want to be in pain on her big day! Today was a little set back but nothing we can’t over come!