No.12 Necrotising Fasciitis-PART TWO-Survived Another Day

Returning home was difficult. I was a burden on everyone. I just wanted to be able to look after my son by myself. I was angry, frustration and sheer pain took a massive toll and I hated what I had become. People had to deal with a lot. I was grieving over the mummy I was never going to be. The house was always filled with someone. My mum was my main carer to allow Graeme to return to work. District nurses were in and out, medical supplies were being delivered, District nurses from different teams around the country would visit so that they could learn first hand how to apply the VacPac Therapy and the pain never got any easier. Even the health visitor continued to make visits I guess she wanted to see that George was cared for amongst the madness! There was a routine and I was so much happier to be home but it highlighted to everyone just how different life was now.

At one point I had to go to A&E because my VacPac had stopped working. I was left all night with no one telling me what was going to happen. This is one of my worst flashbacks. I appreciate it must be hard to understand and its certainly difficult to explain. I think the word I need is dread? My other flashbacks are quite dreamy but this is stark and very real. Maybe it is a real, true memory? I am alone on a ward the likelihood of which is minimal. There is a deathly silence and no one is available to talk. I am waiting and waiting and waiting. George and my family are in my thoughts and I feel completely and utterly helpless. I’m in fear that the NF is going to creep back and here is where I’ll die, with no one at my side. All because there was no access to the medical supplies I needed. Indeed even with access no one there knew what to do with it! Thankfully, I survived another day! Dramatic I know! The Medical Rep for the VacPac Company had to travel from Leicester in order for the dressings to be changed. The system was apparently so new training for its use; settings etc. had not yet started.

I enjoyed opportunities to be out of the house. It took a lot of organization but it was so worth it. There was a hint of normality in going to have a slice of cake or buying nappies. I may not have been the independent mummy enjoying swimming sessions and baby music groups but to see that life continued outside of my four walls was great and being on my mobility scooter proved a highlight too. I certainly hadn’t lost my need for excitement and if breaking the ‘speed limit’ in a shopping centre was the only place to get my thrills then I was going to do it :-)

Jealous? Thought so!

Obviously I was never alone. Mum was with me on one occasion when George needed a bottle. We found a place to have some lunch and I shifted myself into a chair, leaving my VacPac and tubes resting over my mobility scooter, whilst mum sorted George’s bottle. The women on the table next to us decided that now would be the right time to have a conversation about how awful it was to bottle feed a baby. People have no idea!

Love this pic! In my Morphine world. My nurse had even tried to wash my hair in my bed for a rare visit from George. Doctors were obsessed with infection for some reason ;-) Anyway, BOTTLE FEEDING MY SON! Even looks like I'm holding him :-)

Back home the district nurses were great. They were obviously interested to be dealing with my case and to learn new skills. But they were also completely matter of fact towards me. I never felt like a freak around them. I flatly refused to look at my body when the VacPac wasn’t attached. A photo would be taken, as I could disassociate myself from it, and I would marvel as day by day this huge cavity in my body became smaller and smaller and smaller. I was on a lot of painkillers but when dressings were changed, I was given more morphine to try and help deal with the extra pain it caused. My mum, Graeme and anyone involved at these times will be able to tell you that a bucket load of painkillers and Morphine are no match for a dressing change. Imagine a huge plaster being stuck over your torso with superglue and being ripped off. Then the black foam that is packed inside the cavity gets removed whilst trying not to rip out any new growth that has been made. Grit and determination got me through, and of course wanting to prove the docs wrong again. 2 hours to live? Wrong! Hospitalized for 12 months? Wrong! Walking? Wrong! Never closing a cavity that size with VacPac Therapy? Wrong!

I was so proud that I closed on the VacPac but coming off it was actually quite scary. I was so used to the sound of my machine, gunk flowing through my tubes and seeing my container fill more and more slowly. It was a bit like a security blanket. What would happen without it? Would I suddenly become the person I was before? What would life be like? Would I finally be able to shower without being wrapped in cling film first?

I do know from pictures that Christmas 2005 was finally celebrated. Our first family holiday was had in Scotland and I was able to look after George for short periods of time by myself. Even a house move was organized to be closer to mum and dad to make caring for George and me easier. Good job I like the house because I don’t remember choosing it!

These better days weren’t to last though. I was told I needed more surgery. I cried for days. I have no idea where my family found the strength to carry on through this horrendous time. It must have been the biggest slap in the face to them. Here I was, this huge burden for the past year, and now I was going to go and die and leave them to deal with the aftermath! I was ruining every thing for every one. I absolutely believed I was going to die. Part of me is ashamed of my defeatist attitude. But I had contracted NF during my C-section surgery and as far as I was concerned having to have more surgery was like being given the death penalty.

Before the surgery I wrote letters to George and my family to have once I’d gone and even organized my funeral. I still e-mail George now so if anything ever happened to me he’d know what his mummy was like. I even had a ‘Just in case I die’ get together.  Surgery was scheduled for the New Year. Christmas had already been spoilt for everyone the previous year. I wanted to ensure that I would be included in at least one lot of happy Christmas photos for George to look back on.

When the day came I was absolutely petrified. I had no abdominal muscles and I would need this surgery for them to insert a mesh that would keep my vital internal organs in place. I refused to be wheeled down to theatre, as I wanted to walk. Stubborn to the end ;-) Looking back I should have been more demanding. I reckon I’d have gotten away with a lot!

Obviously, the surgery was successful although there was an issue with antibiotics. I’m allergic to antibiotics. I know – not very helpful is it? Anyway, microbiologists found something to pump through me whilst I was battling NF. It was logical to use the same now but it seemed my body had other ideas. Graeme was relieved to have seen me out of surgery and awake. He had gone home to see George and change before returning only to find me non- responsive. Seriously!?! I got through NF, a zillion surgeries and now antibiotics were going to be my downfall! Not bloody likely! Once home recovery was frustrating and my life was a haze of pain and drugs. I just wanted to live a normal life but this was far from normal.

CLICK THE LINK BELOW TO READ PART THREE: 
No.13 Necrotising Fasciitis-PART THREE-Living With Being Alive