Abby back at the QE

The last update on Abigail was 9 days ago. At that stage she was back on the neurological ward at Guy’s hospital in London after a spell in the Paediatric Intensive Care Unit. After that the severity of her seizures seemed more under control and Guy’s even talked of transferring her back to our local hospital (the Queen Elizabeth in Woolwich) the following Monday 22nd.

Unfortunately, Abby had quite a bad time the day after my update and was fitting and restless for much of the day. Needless to say, any plans for a quick transfer were put on hold. Some of Abby’s medication was again adjusted and she had another peaceful day on the Sunday. After some good days with little or no seizures Abby was finally transferred back to the QE last Wednesday 24th. Staff on the children’s ward there were really pleased to be able to care for her again and although we’d obviously rather have her at home, we knew that Abigail was amongst ‘friends’ again.

This week Abby has generally been well with few seizures although she was a little restless yesterday. Swab results from Guy’s and the QE have both confirmed that Abby still has the MRSA hospital 'superbug' and that it’s now infected her gastrostomy site quite heavily. She’s had an intermittently high temperature for the last two days and is on paracetamol – this is likely to be linked to the MRSA infection. In practice this is still unlikely to affect Abby too much, although there is clearly the risk that the infection can spread and cause other complications. The QE are much, much more strict on MRSA infection control than either Lewisham or Guy’s ever were. Abby is in a separate room with the door shut and all persons (staff or visitors) must use gloves and gowns and wash hands thoroughly when entering or leaving the room. Clearly this is mainly for the protection of other patients, but illustrates the proper working practices being put into place.

Abby’s heart rate is often high even when she doesn’t appear to be fitting. This could be due to her infection, her ‘frothing’ secretions problem or simply due to wriggling! Generally she certainly seems more settled. She’s still on a continuous 20 hour feed with two 2 hour breaks a day and the care plan is simply to get her medication, seizure control and feeding to a stage when it’s manageable for us at home. Doctors did initially think that Abby may not spend too long at the QE, but we may have to wait and see how much of a problem the MRSA is first. Also:

• One of Abby’s main anti-convulsant drugs – Phenobarbitone – has now been withdrawn and another of her original drugs Phenytoin will shortly be reduced too. Other more appropriate medication is now being offered since the nature of the fitting seems to have changed.
• The ‘pooling’ of secretions in Abby’s throat which often leads to a short period of choking seems to have subsided a bit. A surgeon at Guy’s who examined Abby felt that it was simply wind that was finding it difficult to escape from the stomach post-operation. Abigail now has her gastrostomy ‘winded’ regularly!

The photo shows Abby back at the QE hospital having reached six months old!