The surgeons were happy with the wound, the renal team were happy that the filtering machine was doing the job and we were pleased with the progress. However, we did notice a rash developing on her arms and gradually creeping round her body. Over the next few days this started to alarm everyone.
A couple of days into the rash episode the doctors were talking about 'Stevens Johnson Syndrome' (SJS), when explained to us this is a rare reaction to medications and given the number of medications Sophie was on, it was hard to exactly determine what the cuprite was, so a best guess was that it was one of the antibiotics. Four days in and the rash was now all over her body and starting to blister, everyone was gravely concerned. Essentially Sophie looked like and was treated like a patient with severe burns. Every two hours the nurses and either Emma or I had to cover Sophie in 50:50 Liquid Paraffin cream to project her skin from the air. Just when we thought that the worst conversation we had with a doctor was the diagnosis of Leukemia, Emma and I were taken to the consultants office for a chat.
Basically the news was not good, so compromised was Sophie's skin that there was a high risk of getting an infection, that coupled with her low immunity would be life threatening. We were told the next 5 days would be critical to get through, the nurses would continue to apply the 50:50, keep up all the other drugs and pain meds and take each day as it comes.
In the end it was nearly 10 days until Sophie was out of the woods and new skin could be seen to be forming. All the time this was going on, she was on and off the blood filtering machine and for a period of time was kept sedated and on a ventilator such was the pain that she was in.
As we were coming through this episode and finally seeing a distant light at the end of the tunnel, the dermatology team were noticing a growing black skin rash on Sophies legs, after some investigations this was confirmed that she had contracted a fungal infection (fusarium). This was not only growing on her skin, after CT and MRI scans, it was also prevalent in her lungs, around her heart and other parts of her body. What more could could go wrong, we felt we simply could not catch a break…
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