Imminent transfer to Guy's
As you may have gathered, last week was a very difficult time for Abigail and us. Things seem to have improved a little since then; Abby’s care has been reviewed and plans have been changed since my last update.
Thursday was very difficult. I last updated you for the second time that day when Abigail was having another major seizure in the afternoon. Such was the ferocity of these fits that when Nix and I visited at 8pm Abigail had already had as much Lorazapam as she was allowed for that day. This is one of her most effective anti-convulsant drugs. Doctors told us that if Abigail fitted badly at any stage before midnight then she could not have Lorazapam administered. With the frequency of fitting seemingly at about eight hours, we felt sure that Abby was due for a major episode by about 9pm whilst we were there. That evening we were also told that a transfer back to the Queen Elizabeth hospital was definitely on for the next day, Friday.
Thankfully, Abby didn’t fit for the rest of the night. She woke at around 7am on Friday with mild spasms but nothing significant and doctors administered Lorazapam as a preventative measure to stop her going into her a full-blown seizure. Despite that, Abigail had a major seizure at 10am whilst Nix was visiting. It lasted about ninety minutes and was difficult to bring under control, so nurses and doctors decided that Abby’s transfer to the QE should be cancelled for that day – she was simply too unstable to be moved. Later in the day, the paediatric neurologists at Guy’s hospital in London were consulted about the fitting and medication. They recommended that Abby stay on the ward but be given one-to-one nursing and loading doses of Phenetoin. This is the anti-convulsant that Abby had been on from birth and only weaned off very recently because it seemed to have very little effect!
On Saturday Abby was finally moved downstairs to the children’s medical ward where she was unsettled for a while but generally OK. As the last major fit up to this point was 24 hours previously, doctors began to wonder whether the Phenetoin was indeed working this time around. Also on Saturday a major review of Abby’s care was undertaken. In hindsight it was felt that not moving her to the QE had been the right decision, and that she would simply have had similar problems there. A significant factor was that the QE do not have any dedicated paediatric anaesthetists whereas Lewisham do. This becomes important if you have to sedate a child and intubate them with a ventilator and doctors wanted to have the safety net of that option. So the decision was taken to plan for a transfer to Guy’s hospital in central London for today (Monday). This is the specialist paediatric feeding and neurological centre for London and the south-east. Consultants at Guy’s had also been advising on medication and care during last week and Abby’s neurological consultant is based there too. It really is the best possible place for her to be, and although the fitting over the weekend seemed to have lessened a lot in severity, doctors were keen for the fitting to be dealt with by the best people.
Yesterday (Sunday) Abby had another better day. Like Saturday she had some small episodes, some of which were self-resolving and another which required a shot of Paraldehyde to stop. Nurses have been trying to avoid giving Lorazapam simply because Abby has had so much of it. Yesterday evening Nix and I were able to see Abby awake and alert – something we haven’t seen for some days now. We were even able to get her out of her cot and cuddle her and she certainly seemed a lot better in herself. Her eyes were particularly good with very little abnormal movement and she definitely seemed to lock on to our faces occasionally. Abigail is currently on half milk feed and half IV fluids, and the only slight disappointment was that another IV line had to be inserted – this time into her head!
As I write, Nix has just called the hospital to find out the latest. Guy’s certainly want to have Abigail but don’t currently have a bed available. They were expecting to have one for today, but need to see if anyone can be discharged before Abby gets transferred. The upshot is that we still don’t know whether she’ll move today but as soon as a bed becomes available at Guy’s she will transfer there.
Thursday was very difficult. I last updated you for the second time that day when Abigail was having another major seizure in the afternoon. Such was the ferocity of these fits that when Nix and I visited at 8pm Abigail had already had as much Lorazapam as she was allowed for that day. This is one of her most effective anti-convulsant drugs. Doctors told us that if Abigail fitted badly at any stage before midnight then she could not have Lorazapam administered. With the frequency of fitting seemingly at about eight hours, we felt sure that Abby was due for a major episode by about 9pm whilst we were there. That evening we were also told that a transfer back to the Queen Elizabeth hospital was definitely on for the next day, Friday.
Thankfully, Abby didn’t fit for the rest of the night. She woke at around 7am on Friday with mild spasms but nothing significant and doctors administered Lorazapam as a preventative measure to stop her going into her a full-blown seizure. Despite that, Abigail had a major seizure at 10am whilst Nix was visiting. It lasted about ninety minutes and was difficult to bring under control, so nurses and doctors decided that Abby’s transfer to the QE should be cancelled for that day – she was simply too unstable to be moved. Later in the day, the paediatric neurologists at Guy’s hospital in London were consulted about the fitting and medication. They recommended that Abby stay on the ward but be given one-to-one nursing and loading doses of Phenetoin. This is the anti-convulsant that Abby had been on from birth and only weaned off very recently because it seemed to have very little effect!
On Saturday Abby was finally moved downstairs to the children’s medical ward where she was unsettled for a while but generally OK. As the last major fit up to this point was 24 hours previously, doctors began to wonder whether the Phenetoin was indeed working this time around. Also on Saturday a major review of Abby’s care was undertaken. In hindsight it was felt that not moving her to the QE had been the right decision, and that she would simply have had similar problems there. A significant factor was that the QE do not have any dedicated paediatric anaesthetists whereas Lewisham do. This becomes important if you have to sedate a child and intubate them with a ventilator and doctors wanted to have the safety net of that option. So the decision was taken to plan for a transfer to Guy’s hospital in central London for today (Monday). This is the specialist paediatric feeding and neurological centre for London and the south-east. Consultants at Guy’s had also been advising on medication and care during last week and Abby’s neurological consultant is based there too. It really is the best possible place for her to be, and although the fitting over the weekend seemed to have lessened a lot in severity, doctors were keen for the fitting to be dealt with by the best people.
Yesterday (Sunday) Abby had another better day. Like Saturday she had some small episodes, some of which were self-resolving and another which required a shot of Paraldehyde to stop. Nurses have been trying to avoid giving Lorazapam simply because Abby has had so much of it. Yesterday evening Nix and I were able to see Abby awake and alert – something we haven’t seen for some days now. We were even able to get her out of her cot and cuddle her and she certainly seemed a lot better in herself. Her eyes were particularly good with very little abnormal movement and she definitely seemed to lock on to our faces occasionally. Abigail is currently on half milk feed and half IV fluids, and the only slight disappointment was that another IV line had to be inserted – this time into her head!
As I write, Nix has just called the hospital to find out the latest. Guy’s certainly want to have Abigail but don’t currently have a bed available. They were expecting to have one for today, but need to see if anyone can be discharged before Abby gets transferred. The upshot is that we still don’t know whether she’ll move today but as soon as a bed becomes available at Guy’s she will transfer there.
posted by The Freestones at 9:52 am
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