Care at home not easy

Since Abigail was discharged on Thursday, caring for her and coping with ‘normal’ family life has been quite difficult. Abby has had to return to hospital every day since she came home except today. On Friday she went to King’s in London for an EEG scan. Although the full results are not available yet, Nix felt that it may have been difficult for any effective conclusions to be drawn because Abby was so wriggly. Doctors will try to compare the brain scan results with those of her previous EEG some weeks ago.

On Saturday Abby had to return to hospital because her naso-gastric tube had come adrift and had to be re-inserted. On Sunday she went back once again because the sticky dressing attaching the NG tube to her cheek had come off completely. The skin on her cheek had become very sore and was weeping quite a bit. Nurses therefore re-inserted the tube once more into the other nostril and attached her tube to the other cheek. Yesterday Abby had a routine weekly visit to hospital yet again to check the levels of anti-convulsant drugs in her blood and doctors will use these regular tests to determine whether her dosage is correct.

Today Abby has not had to go to hospital for anything! She is sleeping quite well at night and her overt fitting does seem manageable now, but the main problem we’re dealing with is her feeding. Towards the end of her recent stay in hospital, Abigail had begun to vomit occasionally and although this wasn’t a specific concern with regard to her feeds (she is putting on weight quite well) is was obviously a concern given that her medication is administered orally.

Since coming home, Abby has been vomiting (or refluxing) her feeds up regularly. In the last two days she has been sick after almost every feed. As well as being tiring, messy and time-consuming, it’s also quite demoralising. Doctors are undecided on the possible cause of the sickness but are not overly worried at the moment. It could be drug side-effects, a reaction to mild fitting, an inability to cope with her feeds, or most likely a consequence of having a naso-gastric tube. This gives the need to get Abby back onto bottle feeding more urgency, especially as her tube feeds often take over an hour to give!

In the short term, the hospital speech and language therapist is liaising with us at the moment – they get involved at a very early stage to assist with oral problems including feeding issues. Abby will return to King’s on Friday for her vision test after which it should be possible to tell whether the link from her optic nerve to her brain is functioning correctly. Our next outpatient appointment with Abby’s consultant is not for another two weeks or so but we may have to liaise before then if Abigail’s vomiting continues as it currently is.

With regards our home life, we’re finding things quite difficult at the moment. It is difficult not to devote a large proportion of our time to Abby, and Rebekah (4) and Joshua (2) are both proving quite a handful for Nix during the day. It may simply be their age, but Nix is also limited in going out and maintaining their routines and finds that she is constantly on the go the whole day.