Our first major setback

After my last post I'm afraid Erin didn't improve and by the Monday morning we took her back to Yorkhill after our health visitor saw her tummy and thought the distension was getting worse. We got there at lunchtime and by then her breathing had become rapid and her temperature was spiking so it was straight to A&E ressus for treatment. We could tell the doctors were quite worried and Dr. Bishop arrived very quickly to have a look at her. They suspected sepsis caused by a secondary bacterial infection so were planning on treating for Cholangitis immediately whilst waiting for results of a blood sample.

Unfortunately the blood sampling was not straightforward (is it ever?!) and 5 or 6 attempts were made before a consultant was finally lucky and managed to fit a cannula. Erin was put on a drip, hooked up to monitors and given a rapid infusion of heavy duty antibiotics. Her temperature continued to spike and reached 39.5 C, we had her stripped to her nappy to help cool her and it became very obvious her tummy was much larger than it had been that morning. Her heart rate reached 200 bpm and her respiration rate was 80+, she was too sick to transfer to a ward until she became more stable and there was talk of intensive care. Eventually the antibiotics and paracetamol started to work and her temperature dropped a little. The blood results came back and her CRP level was now 280, a huge jump from last week indicating a major inflammatory response. Her bilirubin levels had risen to 77 and she was much yellower too although her other liver levels (GGT etc) had stayed the same or improved from last week. She was sent for a chest x-ray which came back clear. We were transferred to a neonatal high dependency bed on ward 3B where the nurses took great care of us all night.

In the morning the GI team appeared to be quite worried by how ill she was with sepsis, she was just lying looking at us whimpering, she couldn't even muster a cry when they repeated the bloods. They tried to fit a long line but her veins weren't up to it so we were told she may need to go to theatre to have a central line fitted if she required antibiotics for more than a week. Her cannulas were barely lasting a day and we had several stressful attempts to re site them in the middle of the night when I had to stop them from using her scalp veins, thankfully the nurses backed me up and we avoided that stress.

She was sent for an ultrasound scan which showed large pockets of fluid but her liver and spleen were unchanged so the likelyhood of Cholangitis was lower. She had a lumbar puncture to check how far the infection had spread which thankfully came back clear so she would only need i.v. antibiotics for 7 days instead of the 21 we first thought. Stool samples came back positive for Adenovirus, a gastroenteritis causing virus, which would fit with the symptoms from the first week of her illness. Although we'll never know for sure, it was likely this was the cause of the sepsis as a secondary bacterial infection was never found. I suppose it is positive that it was nothing directly linked to her liver disease but it was still terrifying to go through. It wasn't until the weekend when one of the GI consultants told us she had been a very very sick baby we really understood what this virus had done to her wee body.

So after a long 8 days with a great deal of poking and prodding including 25 needle jabs, a course of heavy duty antibiotics, a lumbar puncture, ultrasound scan and a chest x-ray, Erin was allowed home and is feeling much better. Her bilirubin was back down to 55 and CRP to 35 so we'll be back on the 30th Nov for repeat bloods and tomorrow for a follow up ultrasound scan. I think it will take her a few weeks to get her strength back so until then we are going to wrap her up in cotton wool and kisses. We hope this isn't the beginning of a long winter of illness....

On a positive note she did her first giggle in Yorkhill when Jamie was bouncing around the room like a crazy thing, it was very cute!