Abby is still in hospital and the latest news on her is mixed. She has only been sick a handful of times since the new year, but this is because she is now on a two-hourly feeding regime which would be very difficult for us to maintain and cope with at home. Despite being on a high-energy milk she has continued to lose weight since Christmas, although the latest weigh-in yesterday brought the better news that she has finally begun to regain weight again. Abby continues to have regular appointments with a dietician whilst in hospital to monitor her weight and feeding.
Nix and I spoke at length with Abigail’s paediatric consultant on Tuesday evening. The results of a 24 hour pH test on Monday showed that Abigail does indeed have an extensive gastro-reflux problem. This means that the valve at the top of the stomach doesn’t close properly and she is susceptible to heartburn and vomiting. These results were not a surprise given her symptoms and condition. Doctors will now consult with surgeons at another hospital to see if they are prepared to operate on Abigail to perform a procedure which would largely correct her reflux. It’s also likely they’d perform a simpler operation at the same time to insert a feeding tube directly into the stomach. This tube would not necessarily be permanent but would allow Abby to be fed more easily (not down the nose) whilst we try to retrain her to feed orally. Given her weight, it may be that surgeons feel they could not perform these operations just yet and there may be a long waiting list anyway.
Abigail's’ fitting does seem to have worsened since being in hospital too. She has regularly had a drug administered to calm her larger convulsions down. Abby’s consultant feels that the nature of her fits may well change over time (something that is fully expected) and that her medication may have to be adjusted as this happens. As if she didn’t have enough problems, Abigail has recently had very bad skin on her face, with soreness and weeping. In addition to being allergic to one of the dressings used to keep her feeding tube in place, she also seems to have eczema and another skin virus. A dermatologist has seen Abby and she is now on three different skin creams as well as all her other medication.
When we spoke to the consultant on Tuesday, we asked lots of difficult questions regarding Abby’s life expectancy and prognosis given her current condition. We were told that things are indeed very bleak and that Abigail has generally not responded well to treatment. In particular, the fitting is still not completely under control and doctors fear that it may never be so. Given the fact that Abby has not really progressed at all since birth in a developmental sense, doctors also fear that she may not ever reach many of her ‘milestones’ and that she may not move forward much developmentally. Abby’s consultant agreed with us that she does seem to be deteriorating in many ways, although in terms of her weight she has put some back on in the last few days.
It was reiterated again to us that it’s almost impossible to put any sort of prediction on her life-expectancy. She may well live to her twenties, or she might not live to next Christmas. The doctors say that children with Abby’s symptoms are often surprisingly resilient and can ‘turn the corner’ very quickly. On the other hand there is the difficulty over her almost non-stop feeding regime and how we would cope with that at home. Nurses have tried several times to revise her feeding to three-hourly, but the vomiting returns. We also wait to see what the surgeons say about correcting her reflux problem.
All in all, the revised prognosis this week has served only to confirm our thinking on how Abby is doing. Although we don't particularly expect to lose her in the very short term, we are continuing to make every opportunity count with her and to stimulate and relate to Abigail as best we can whilst she is in hospital.
