Recommendations for surgery

Overall, Abigail’s long-term prognosis remains the same but recently her fitting does seem to have subsided significantly after a reassessment of her medication. She continues to be cared for in hospital.

Back on 13th January, Nix and Abby attended a clinic run by the regional paediatric epilepsy specialist from Guy’s hospital. Generally the consultant seemed quite positive and proactive and made some significant changes to Abigail’s medication in an effort to get her fitting under more control. Many of the drug alterations have to be made over a period of time and these are still continuing now. One change is that Abby will not now be offered Diazepam as ‘quick-release’ anti-convulsant for her more prolonged fits simply because it seemed to be having little or no effect. Thankfully, she seems not to have needed it anyway for the last two weeks or so.

There has still been the problem that nurses are unable to increase the volume of Abigail’s feeds for fear of her vomiting them up. Instead they are having to give smaller concentrated feeds with added calories more often. Despite this, in the last month or so Abby has either fractionally gained or fractionally lost weight each week. So on 26th January, Nix travelled with Abby up to Guy’s in London to go to a feeding clinic. This was a useful meeting attended by a neurologist, a speech and language therapist and a dietician. They examined Abby and concentrated particularly on what has become quite a marked oral sensitivity around her mouth caused by being fed by tube rather than orally. The results were some practical advice on feeding suggestions and simple exercises to help desensitise her mouth. The neurologist also commented on the possibility that much of what is currently interpreted as ‘fitting’ may well be simply evidence of discomfort due to reflux. He said it’s possible that much of Abby’s apparent stiffness and ‘abnormal movements’ may just be a reaction to her severe reflux problem. In light of this and other evidence, the specialists at the feeding clinic were very happy to add their support for a recommendation to operate on Abigail at the earliest opportunity to correct the reflux and put a stop to her vomiting.

Although referral for surgery was initially slow to get going, things seem more definite this week. Abby will be transferred to Lewisham hospital this Wednesday 11th for some more tests before hopefully undergoing two surgical procedures sometime the following week (16th onwards). The main operation will be a Nissens Fundoplication which essentially corrects the weak valve at the top of her stomach which currently allows food back up into the oesophagus. This procedure, although not complex, does rely quite heavily on the skill of the surgeon – if he tightens the passageway too much Abigail will be unable to burp or vomit at all. Too loose, and her reflux will not be fully cured.

The secondary procedure will be a gastrostomy which will insert a more permanent feeding tube directly into the stomach through the abdomen wall. This will mean that Abby will not have a naso-gastric tube down her nose which will be more comfortable and more discreet. Long term, it’s hoped that these two procedures will enable her reflux to be corrected and for her to feed more normally and to begin to thrive and gain weight. If and when Abby moves back to oral feeding again the gastrostomy tube can be removed. Abigail is expected to remain at Lewisham hospital for 7-10 days recuperating. We don’t know whether she’ll then be moved back to the QE, but it’s expected that if the operation proves a success and Abby begins to feed properly she’ll then come home once again.

Lastly, let’s give you some other minor news in brief!

• As mentioned, Abby’s weight has fluctuated up and down a little but has essentially remained the same since she was admitted on 29th December. This week she’s lost a tiny amount again and currently weighs 11lb 2oz – Joshua and Rebekah weighed around 15 or 16lb at the same age.
• You may remember that her skin had been quite bad recently – she has suffered from fungal infections and reactions to many of the dressings and tapes used on her face to keep her feeding tube in place. It’s good to report that this seems to have cleared up completely in the last two weeks. A nursing regime of creams and daily baths has meant that her skin now looks as beautiful as it should! Also, a dermatologist who examined Abigail suggested a trial milk-free diet for a month which is still in effect, but her skin complaints may well have been due to other reasons.
• Although Abigail does still fit from time to time, she has seemed a lot more settled this week with few instances of sickness. Abby has been very relaxed when being held and has even made a fuss when put back in her cot or when being changed – these all seem like small steps forward. At the moment, nurses are trying to sit Abby up in a baby chair during the day to aid her digestion and to offer a better view!