EEG encouragement and gastrostomy scare!

Abby is still at home and we’ve now broken the record for the longest time without a hospital admission – she’s been home for almost ten weeks. We feel as though she now lives at home and occasionally has to make hospital stays, rather than her staying at hospital with the occasional home visit!

The end of July was a period of instability with Abby’s fitting so it was decided to conduct another EEG scan. This measures the electrical activity on the brain at rest and during a seizure and can help locate the specific area that is seizing. As has happened before, Abigail didn’t do her ‘best’ fitting when she was hooked up to the machine but doctor’s did get some useful results. There certainly was a measure of epileptic activity during a seizure but more interesting was the ‘at rest’ measurement. Doctors told us that previous EEGs showed Abby’s brain to have “very slow” general activity – as if asleep – even when she was fully awake. This indicated severe immaturity in her cerebral development and essentially meant that she was almost vegetative in her brain activity. This most recent EEG clearly indicated that her brain was operating with a “more normal” pattern akin to thinking as opposed to sleep. This was described as a definite “maturing” of the brain and doctors said this was “reassuring”. We’d like to think that the stimulation and exercises we do with Abby have contributed to this. Certainly, she seems to be responding more to things – she still really enjoys her BeActive box.

We also have a ‘body awareness’ cassette which consists of music and actions which we take Abby through before bedtime. These are designed to stimulate responses to music and have actions to help her discover her hands, feet, head and limbs. We’re sure we’ve noticed her expression change when she’s doing these exercises. She appears to recognise certain music and will often respond to movement of her limbs. We’re also wondering whether she is sometimes trying to smile. Every now and then she begins to change the muscles around her mouth when a smile would be an appropriate response, but then goes into a wide yawn. This could well be due to the mismatched ‘wiring’ pathways in her brain – a major result of her brain damage – which mean that a displayed movement or expression may not necessarily be the one Abigail had intended.

After a mishap in hospital where a probe was incorrectly inserted into Abigail’s oesophagus, we eventually got the results of another pH study. This measures acidity rising abnormally from the stomach into the oesophagus. Although reflux was largely corrected with surgery back in February, it’s thought she may still be suffering from discomfort and that it may even be triggering fitting episodes. The results showed that there was still some reflux but it isn’t considered bad enough to be a major problem.

We had a bit of an emergency on August 9th when Abby’s gastrostomy peg came out from her stomach! It all happened at a difficult time – Matt was stuck at work in London and Nix was at home with three children at teatime needing food. Meanwhile, Abby had not long been fed and now had a small hole in her tummy leading directly to her stomach! After surgery to fit the peg, we were told that if it ever came out we must get Abigail to the nearest A&E as quickly as possible. Apparently, the level of healing in infants is such that the hole will begin to close over within half an hour! Eventually, Nix struggled to Lewisham hospital where a new gastrostomy device was fitted. We still don’t know how it came out. Abby – who was in no distress at all during this – may have simply yanked it out. In another step towards her nursing proficiency (!) Nix has been given a spare peg and told that there would be no harm in her attempting to re-insert it should it ever happen again.

Abby is still fitting occasionally but they’re not major seizures and seem to resolve themselves in a matter of seconds. She is sleeping OK at night although she does wake for long periods sometimes. We often hear her murmuring, but since she doesn’t really cry at all we’re just about getting enough sleep. We had a great week away in Sussex recently and it was good to have a small holiday with all three children there. We’re also going away for a weekend to CenterParcs soon.

We had a regular out-patient appointment with Abigail’s consultant at the Queen Elizabeth hospital just last week. This was a normal check-up but we did continue to explore the possibility of a CT scan of Abby’s head. The back of her head is growing oddly but doctors say this is caused by uneven growth under the skull due to the brain damage. Despite the wealth of medical opinion against us we feel that there may be more to it than that. Abby’s head was never quite right from birth, which by all the best estimates was just a day after the insult to her brain – clearly not enough time for her head to have begun to grow irregularly. Abby’s consultant was sympathetic and sent her down for an x-ray there and then. In a comparison with an x-ray taken in January, the growth at the base of the skull has clearly increased in size. It’s proving difficult to persuade doctors to give Abigail a CT scan, but our local consultant will attempt to fight our case over the next few weeks. We also asked whether there was any change to Abigail's prognosis and long-term outlook. There isn’t really. It’s been easy to be lulled into a false sense of security because she’s been relatively well and at home for quite a while now. But doctors say that estimating a life expectancy for Abby is incredibly difficult, and she could still develop very serious and potentially life-threatening problems very quickly indeed. Abby’s consultant agreed that the winter months "will be difficult".

Abigail Erin will be one year old on September 16th. It’s been an amazingly tough and long year. Given that the very worst case scenario at Christmas was that “she might not make it to her first birthday”, we think Abby’s done rather well. She is clearly an extremely strong fighter. We all love her to bits and are incredibly fortunate to know her and be caring for her, and she brings us a lot of pleasure. We just hope that we are able to bring her some too.