It’s been awhile and I wish I could say it’s because things are going well. Since our last post I have had 3 surgeries a few procedures and waiting for 2 more admissions before the end of the year. Sit back it’s a long one. I’ll start with Jan-Feb admission.
So what was expected to be couple days with an ICP to check my pressure ended up with two surgeries and nearly 2 weeks in hospital. The fun started waking up from the ICP surgery unable to breath. It was scary but I knew I was either in ICU or recovery and they could sort me out. Later I asked the anaesthetist thinking maybe I had a reaction to something cause of my MCAS and just had to be aware. Apparently it was anxiety…..they needed nebulisers and adrenaline injections for anxiety. When I told the next anaesthetist (who had done my tethered cord a few years back) she professionally rolled her eyes on my behalf at that BS.
While I had the ICP bolt in (to measure my cerebrospinal fluid pressure around my brain) we found my shunt just wasn’t working. So we decided to go back in and fix the main part. The positives being is we swapped the brand as the one I had you had to push hard to access it. Which was hilarious fun at 6am over a week. The one I have now is digital so easier to use for both of us. I also had 3 parts of my head shaved: small top part for the ICP bolt, near my shunt at 6am when we were having trouble accessing it and then the shunt area.
This was the horrid mess I had before the 2nd surgery as I couldn’t wash or brush my own hair for a week. I did meet (and remeet) some lovely nurses. Due to my prolonged stay, being young and knowing medical stuff I had some nurses hang with me. I had one lovely nurse brush this horrid mess for me and plait it ready for surgery. She did pass that fun to her friend after my next surgery. Hilariously like my fusion the surgeon shaved the hair and left the shaved section in my plait for it to fall out. The nurses were a bit shocked and lots of laughter. Another surgeon who shouldn’t give up his day job to be a hairdresser. I also recognised a nurse from my tethered cord surgery due to her bed bath skills. My god she should train people she is that good that I recognised her 2yrs after. It was spa like.
What was fun was I literally had a tube going into my brain attached to the machine in the pole (and often had IV fluids). So I was plugged into the wall and every time I had to move far we had to be super careful not “pulling my brain out” (jk). As per usual my issue was something few nurses dealt with.
During the 2 weeks there I was in 3 different rooms. First one was just the night before surgery and I didn’t meet the other patient. Between ICP and Shunt surgery I shared rooms again and actually had a a really nice fellow patient. Obviously there was little privacy so she heard a lot of my doctors and was nice to have someone bounce thoughts off (like if I should do the shunt surgery) and laugh about some of my doctors personalities (one is super smart and quick and was a whirlwind). It was a good balance of chatting and own time and I enjoyed it. After my shunt surgery I got my own room for a week which was good.
As the shunt wasn’t urgent the choice was up to me and I was so annoyed because I had opening night tickets to see RENT which I ended up missing. I was in ICU again after shunt surgery (normal to monitor) and the nurse and I had a good chat because RENT covers the AIDS epidemic and he worked as a nurse during that time.
Thread the lovely scar I got from my shunt surgery . We honestly, have no clue if it helped and it’s not broken even more further down. We just decided to leave as is for now and see what happens with the shunt at its lowest settings (draining the least amount of CSF).
The shaved spot from my ICP was bigger than I expected. Before my shunt surgery I was half debating having them shave my entire head. I do have a plan if I know I had a big surgery and shave coming up I want to dye my hair an outrageous colour the month or so before and shave it all off. As I didn’t get a chance to I decided I wasn’t ready to suddenly go bald. Everything is pretty well grown now and just a secret between me and my hairdresser.
During my hospital stay my general physician/internist also jumped in and we tried several IV saline runs to try and help my POTS. One day we got up to like 12-14L and the nurses were a bit shocked how much it took before I had to pee every half hour. As a last minute thing the day I was discharged we put a PICC line in so I could continue IV fluids at home.
I’ll leave that for part 2 post as that was an adventure.
I feel like the hospital visits achieved a couple things and absolutely nothing at once. Yes, we found out my shunt was broken and fixed part of it - but it still might be broken. My neurosurgeon said the values from my ICP was normal but countless other doctors disagree and say it’s low. The values are a grey area. They defiantly are not high (or even close). So that’s one positive that my intracranial hypertension is in remission. However, this and other investigations have been because we thought I was too low now not high.
So my 2-3 day (weekend) small surgery (go in Thursday after a half day of work and be ready for next Thursdays work) ended up 2 weeks and returning with a PICC line. While I was in hospital my work told me they were (finally) doing a shuffle and getting a FT employee. I was offered to apply for a causal position. Originally I thought this was a sign to move in because my health was obviously not great. They still managed to (beg) get me back to train the new employee and I haven’t had a shift since. So wasn’t terrible seeing I didn’t intend to go back but found it hilarious. I also took that semester off TAFE and managed to finish that certificate IV this year (finally.)
So part 2 will be PICC, next surgery and other life.
Comments