A better few days

Things have improved with Abby quite a bit since I last updated you. After being admitted to Paediatric Intensive Care again on Sunday, Abigail spent two days there whilst being closely monitored on very high doses of drugs. Thankfully, she didn’t have to be completely put to sleep or ventilated in order to stop her major fitting. She was started on a new steroid medication to help with her seizures and also given an IV infusion of Midazalam – another new temporary drug designed to stop the convulsions. Whilst on the PICU ward on Monday, Abby was given another EEG scan which seemed to conclude that not all of her abnormal movements may necessarily correlate with actual fitting. Whilst this seems good news, it makes the job of interpreting what is fitting and what is not more difficult for nursing staff!

After a bad day on Sunday, Monday and Tuesday morning, things seemed to be calm down a bit and Abby was taken back up to the neuro ward. It was felt that she didn’t require intensive care because she was maintaining her airway and vital observations on the medication given to her. Once up on the ward, the Midazalam infusion has been gradually decreased and last night was stopped altogether. Another major change in her drug regime was taken whilst on PICU. Abigail will be weaned off her long-term anti-convulsant drugs Phenobarbitone and Phenytoin. It was decided that whilst these drugs have worked in the past for Abby, they’re now proving ineffective against the severity of her current seizures. Instead she’ll be given Epilim, another anti-convulsant that is thought to be more appropriate for the sort of seizures Abby has had recently.

The good news is that the combination of all these changes has meant that Abigail has had a really settled time for the last few days. In fact, there hasn’t been one major seizure since Wednesday and no intervention required. She’s been awake and alert and we’ve been able to pick her up and cuddle her quite a bit. On Thursday Abby was taken down for an ERG eyesight test, the results of which are yet to be confirmed, but the technician there seemed to be making positive noises. All in all, Abigail once again seems like a different child to the one of the last two weeks. Other brief news:

• Abby was weighed yesterday and she has remained static at the weight she was when admitted to Guy's a week and a half ago. This is not really a surprise given that her feeding has had to be cut and she has been fitting so much. Abby is now back on reduced feeds with no IV fluids.
• A CT scan of her skull will not now be undertaken – an examining radiologist felt that there was not enough justification for a scan and that any abnormality in the shape of Abigail’s head was explained by the brain damage sustained before birth.
• On Tuesday Nix spoke at length with Dr Hughes, the senior Paediatric Neurologist in charge of Abby. The consultant was encouraged by the difference in Abigail since she last saw her in January, despite her current problems.
• Abby is still having problems with saliva pooling in her throat which leads to choking and the need to be suctioned. This appears to be a direct result of her operation, and this will be proactively investigated by a surgeon to see what might be done about it.

At the moment it looks as though the rollercoaster is trundling along in Abby’s favour! We’re just hoping that she gets a good rest from the constant seizures of the last few weeks.