More settled but worry over vomiting

Last week Abigail’s condition seemed to be quite changeable and it was difficult to pinpoint any trend in her condition. As you may recall from my previous update of the 14th, Abigail had some major epileptic episodes last Friday and she had another bad day last Saturday too. She had to have more Lorazapam injections, which offer a strong and immediate anti-convulsive treatment as well as her regular Phenitoin and Phenobarbitone drugs. Her oxygen saturations were also dropping occasionally and Abby did have to have oxygen gently administered to bring her sats back up.

Since last Saturday evening, though, Abby seems to have been much more settled. Since then and during this week she has only had minor twitching and episodes that appear to have resolved themselves in a matter of seconds rather than minutes. Doctors have decided not to administer oxygen in the event of these minor fits as her saturation levels seem to correct themselves fairly quickly. Abigail has also not had to have the stronger Lorazapam drug offered at all since last Saturday evening.

Nix has been able to cuddle and hold Abby much more this week and she has certainly seemed more settled. There also seems to be some possible signs of better eye movement, with Abigail appearing to ‘lock on’ to faces momentarily – something she has not done up to this point. We are still unsure of what (if anything) she can see.

Despite a good few days, there remain some short term concerns. Abigail is still vomiting her feeds up from time to time. Although she is putting on weight well at the moment, this is obviously a concern given that her drugs are now given orally. Also, Abby’s drug levels are being monitored in liaison with an epilepsy specialist from Guy’s hospital in London. She is currently recommending an arbitrary drug level of 22 in Abby’s blood. Despite several increases in her dosage, blood tests this week have revealed a level of just 1. This is both good and bad news. On the good side, it means that there is still plenty of scope and ‘headroom’ in her drug levels should the fits remain difficult to control. On the bad side, it means that Abby is likely to spend some more time in hospital whilst these levels are corrected and monitored closely. Anti-convulsant drugs ‘metabolise’ in the body very rapidly so large amounts have to be given initially and then smaller doses are needed to keep the level up.

As far as the medical staff are concerned, none of this changes Abigail’s long term prognosis which remains very bleak. But for us, this week has been a better week and we’re hoping that it continues into a real trend of improvement in the treatment of her fitting. Once that is under more control we may be able to begin oral feeding again and have the prospect of bringing her home once more. Abby is likely to remain in hospital for another few weeks yet.