Abby is five months old

Our little Abigail was five months old on Monday and what a five months it’s been! Here’s the latest on Abby from the last few days.

We’ve continued to experience frustration with some of the care and bedside manner of staff at Lewisham hospital, but things have improved somewhat over the last week or so since we’ve gently put our foot down over several matters. One positive is that there is an excellent play specialist on Abby’s ward who has been visiting her and stimulating her with various lights, fibre-optic devices, music therapy and touch.

This week doctors ordered that Abigail’s continuous feeds be increased from 20ml to 30ml per hour. This large increase caused us quite a bit of concern which we asked nurses to document in her notes. The Queen Elizabeth hospital had abandoned continuous pump feeding at 23ml per hour as milk was beginning to pool in Abby’s throat and choke her. Thankfully, the very small amount of weight she has put on since January seems to have negated this as she does just seem to be coping on 30ml per hour now. Nurses are weighing Abby every day and today she has maintained her weight from yesterday at the heaviest she’s ever been! Having said that, she is still technically underweight and a good four or five pounds short of what she should be. Doctors are simply trying to fatten her up for surgery on Monday.

Another minor frustration this week was the news that Lewisham have simply run out of Topiramate – Abigail’s main anti-convulsive drug. They claim that there is only one supplier in the UK and that a new order would take two weeks to arrive, by which time Abby will be home. This is a rather different story from what we were told in our local village chemist, who said that they could order the drug for us but that it might take “three or four days to arrive”. We’re not quite sure what the real story is, but in the meantime the Lewisham pharmacy are having to crush tablets for Abigail so that they can be fed down her NG tube.

Today, Nix and I spoke with Abigail’s surgeon ahead of her operation. She will undergo a Nissens Fundoplication (to correct her reflux) and a gastrostomy (to insert a feeding tube directly into the stomach) on Monday 23rd at 1.30pm. The procedure will take approximately ninety minutes. There is the possibility that Abby will need to spend a night in the Paediatric Intensive Care Unit on Monday after which she will continue to have her drugs administered, but all other fluids will be by IV line. After three days she will begin feeding again. Recovery time is expected to be around a week and we’re hoping that once Abby is stable she can be moved back to the QE hospital, although whether this happens remains to be seen. Other minor points:

• In the end, Lewisham didn’t repeat any of the tests that the QE had done as they said they would.
• Abigail’s fits still seem under good control. She’s had no visible fits for several weeks now, although in the last few days she has become noticeably more restless and uncomfortable. We think this is because she is up to the limit on her feed intake and that her reflux is troubling her.
• In her spare time, Abby enjoys watching her mobile and fibre-optic lights, listening to classical music, and being cuddled and hearing the voices of those she knows!