Medication changes have no real effect

Apologies that it’s over a week since our last update on Abigail’s condition – life has been very hectic and much of our time has been taken up with visiting Abby in hospital. Last week was particularly difficult with Abigail’s fitting seeming to worsen and drugs having little effect, and that really continued into last weekend too. On Saturday we saw another of the consultants who said he'd decided to review Abby’s main drug level on the Monday with a view to increasing the dose if blood tests showed that her tolerance could be extended. Unfortunately, the level and severity of her fitting in the meantime meant the decision was taken a day earlier on Sunday (9th) and the drugs were increased significantly.

In a change from our expectations and assumptions of last week, the consultant also commented he felt that there was no immediate danger on Abby’s life in the short term. He even went as far as to say that she had almost “about as much chance of dying in the next few weeks and months as you or I.” This news has been difficult to digest because it has been made quite clear to us that Abby will in all probability have a very low quality of life. In addition to severe cerebral palsy, she is expected to have severe mental and physical handicaps affecting speech, movement and intellect. We are still concerned about her sight and the consultant on Saturday said he expected her to be unable to walk, talk or feed herself. In short, she will almost certainly be completely dependent on us.

It is horrific to think of your own child in these terms, but it’s incredibly difficult to imagine life for Abby under these circumstances for any great length of time and we had begun to wonder whether she might be spared a long life like that. As doctors have already said though, it is notoriously difficult to predict these conditions in young babies and so we feel that we must press on and expect the bleak prognosis that has been given. Some better news this week was that Abby was weighed on Monday and is now 9lb 12oz – nearly three pounds up from her birthweight and looking much bigger with it!

At the beginning of this week, Abby’s consultant held some more discussions with a specialist neuro and epilepsy consultant at Guy’s hospital in London. She made some suggestions as to medication levels and combinations of drugs that could be tried. These were put into effect and this week has seen what appears to be some improvement in the control of Abigail’s fitting. In the last few days she has seemed much more relaxed and has been having less major episodes. To this end, Nix and I have been able to hold her much more and have bathed her a few times without much epileptic reaction – something that we couldn’t have done last week.

As I write this, Nix has just returned from the hospital tonight (Friday 14th) and has said that Abby has actually had some more major episodes again today and that her oxygen saturations have dropped from time to time too. She has even had to have oxygen administered by mask occasionally.

As you can gather, events seem to change constantly and it’s difficult to see any trends in Abby’s condition over more than a few days. Her consultant did chat to us both yesterday and confirmed again that it may not now be possible to ever fully control all the fits, but that they were still confident they could be brought under much more control that is currently the case. There also seems to be quite a range of drugs still available to try should the current cocktail not prove as effective as hoped. Doctors have said they expect Abigail to remain in hospital for another week (possibly two) whilst her medication levels are honed and adjusted.