Tuesday, 30 August 2011

Where do I live?

So after 25 days, the hospital finally stopped my IV antibiotics and let me go home!!! I had pretty much forgotten where I live, what it was like to not be attached to wires, drips, BP machines, pulse things. It is nice to not have 30 mins of IV at 9am, 1pm, 5pm, 9pm, 1am and 5am. To not have blood tests everyday, to not have my blood sugar taken twice a day because I was on such a high dose of steroids, to not have my BP taken and to generally not be on my own all day until visiting time.
I was so excited to be at home. It was great. I had chinese takeaway and caught up on some TV. Didn't sleep very well because the bed was too flat. Woke up and felt oky till 11am. My vision went squiffy, and I noticed my incision had swollen up. Decided to try and ride it out. It was, after all, a Saturday and a bank holiday weekend.
Got to 1pm and I was vomiting, even with my anti-sickness tablets inside me. Also my incision felt damp, which it had the previous evening, but this was a fair amount more. At this point I really, really did not want to go back to the ward. I decided to phone NHS direct and ask for advice. They told me I needed an ambulance. I didn't want that so they referred me to the out of hours GP service. Got a call back about 5 mins later and the GP also said she wanted me to get an ambulance. She also said she would phone my ward and ask advice. 20mins later she phoned to say they wanted me to go to a local hospital to see a Dr there who would decide if I needed to be readmitted.
I was hoping that this doctor would just say my incision was infected and that was the dampness I could feel. But nope, it was a clear fluid and could pretty much only be a CSF leak (I knew this all along, but was convincing myself otherwise) He phoned the ward and after a while waiting for a bed I was admitted. I had left bed 15 just 24 hours previously, and was admitted to bed 16.
So I spent 2 nights in again. My wound was leaking a fair amount on the first night. It was not only CSF leaking, but also blood. I woke up and my pillow looked like I had stabbed it =D
Seemed to stop leaking and they observed me for a day and did some scans. The scans show that my ventricles are still considerably enlarged so I am still on the way to having a shunt fitted. They gave me the option of going home on Monday or staying today. I was out before lunch on Monday!!
I am on Rifampicin 600mg twice a day until September 10th. I do not like this antibiotic. Kinda gross so don't read the next line if you don't wanna barf. Basically this drug has turned my urine, stools, tears and sweat bright orange. Not nice. Also I have to take it in the morning, which is when my head is at the worst. I get really bad sickness and the antibiotics have turned my vomit bright orange and they burn my mouth so bad. Gross I know but hey, this is my blog so I am going to type this =D
So, yeah, see my NS about 9th ish of September, my infection markers need to be normal for him to consider surgery, as he doesn't want to spread my nasty meningitis around my system. He gave me the option of either having a shunt fitted right away, or having an ICP monitor fitted first. I think I am going to take the ICP route. I think it is much less invasive and it may show I do not need a shunt. My NS did say it was unlikely that the ICP would show normal pressure after mine was so high but he did say it would help him sort out settings for the shunt so if I wanted to take that route I could.
I am still getting tired easily. I walked to the postbox today. This is literally across the road and can be walked in less then 5 min there and back. By the time I got home I was apparently very pale and needed to go to bed. Had a 20 min nap and now feel a little better. Sat in the garden in Jacobs little play house and read some books with him and just chilled. Still tired and sore and could sleep for a week but just need to pace myself.
So, that is all. I will be sure to update when I can. I have decided I bloody hate chiari, hydrocephalus, scoliosis and meningitis. However, being in hospital I saw people who will never get better, never have a quality of life. I saw families broken due to a person injury. Life is harsh, but I now know that it is also short and can change at any time. I am going to get better and then grab every second I can!!!

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