My recovery was going well, I was getting stronger every day, I was starting to feel normal again until....4 weeks post op! I woke up with a strong headache and felt really flat. I was trying to ignore the headache and push through because I didn't want to think that something bad was happening. The next day the headache was still there....I then started to throw up continuously and felt like I had no energy. Doug immediately took me to the hospital and I was admitted for some testing. It was a Saturday so the on call neurosurgeon was called, he said that my MRI showed some fluid under the skin but they couldn't tell what it was. He wanted to keep me in for a few days so they could monitor me and administer antibiotics through a drip for a few days. I kept trying to stay positive as I didn't want to imagine the worst..... if there was an infection and it got worse I knew they would have to go back in. At this stage my wound had not even healed and I was only just feeling like myself again.... I was so scared!
I hated being in the hospital again, away from my husband and daughter, plus COVID cases had started to break out again in SA so restrictions on visitors in hospitals were brought back in. I met with an infectious disease specialist who was checking my bloods every few days. On day 4 the infections disease specialist said that my blood levels had not improved to the level expected so they recommended a PICC line through my arm to administer daily antibiotics directly into the large veins near my heart for up to 5 weeks. I could not believe this was happening. My sister was with me at the time when the doctor recommended this and I just broke down, I felt overwhelmed, deflated and felt like it was a step back....my worry started to kick in with the "what ifs". A PICC line was inserted the next day and an antibiotic bottle was attached to me for 24 hours a day. A nurse was scheduled to visit me daily at home to change the bottle over.
Within 24 hours of leaving the hospital I had fluid leaking from my head....I rushed back to the hospital and waited in the waiting room from hours before being seen. In the early hours on 9 July 2021 the on call neurosurgeon advised that the antibiotics weren't working and they would have to go back in to remove the infection and worst case if the infection was on the bone they would have to remove as much skull as required to mitigate further infection. I asked for my neurosurgeon to be contacted. He called me straight away and said that he had already booked a room and theatre at the Calvary Hospital so he can go back in and get straight onto it. With no time to think Doug and my mum drove me to the hospital and I was rushed into theatre. My surgeon did advise that I would come out with some skull removed before I went in as he wanted to ensure I was ok with this going in, this surgery was called a craniectomy. I was determined to get through this and completely trusted my surgeon.
The surgery went well and he was able to remove the infection and the bone flap on top of my head. I would have to wear a helmet until the next cranioplasty surgery would occur. I had a drainage tube running from my head, with my head wrapped in bandages. I was dreading looking at myself as I would have no skull on top of my head and was anxious about what that would look and feel like. When the bandage was removed it took me a few seconds to get the courage to look...the scar looked nasty as I had to have sutures this time, instead of staples, as there was no bone there. I was lucky that it was on top of my head just back from my forehead so from the front you could not really tell that there was no bone there but from the side you could tell.
To be honest the recovery from this operation was easier; however, because the scar had been opened again the itchy feeling was intense whilst it healed. I also became very paranoid of reinfection, I was washing my hands constantly, not touching the scar or my head at all and I started changing my pillow case every day. I know it sounds crazy but I just did not want any further complications.
When I left the hospital a week later I had another PICC line inserted and antibiotics were to be administered daily though the IV line for 6 weeks, then if my blood tests were ok I could be moved to oral antibiotics from there for another 8-10 weeks. It was a long journey ahead but keeping positive and having support around me was what got me through.