Three different hospitals in twelve days
The last major update on our daughter Abigail was nearly two weeks ago and a lot has happened since then. On 19th April, Abby went into theatre at Lewisham hospital to have a faulty gastrostomy peg changed and to have an exploratory endoscopy in her oesophagus. This was to check that the Nissens surgical procedure on her stomach to prevent her being sick wasn’t too ‘tight’. Abby has been suffering from a ‘backlog’ of saliva secretions in her throat which makes her gag and choke and also led to her very dangerous spell of pneumonia in early April. Doctors were concerned that the Nissens may have been so tight that it was now preventing anything at all from draining into the stomach. The upshot of this was that surgeons found the Nissens wrap to be in perfect order and that there was indeed a suitable opening into the stomach. We were very disappointed with this as it effectively meant that there was nothing surgical that could be done for Abby’s ‘frothing’ problem. That day (19th) was also extremely stressful because it was Rebekah’s fifth birthday and we were all at her party whilst Abigail was in theatre – none of us were able to be with Abby and no one from Lewisham rang us to let us know when Abby came out of theatre.
All this left everyone wondering why it was that Abigail did not seem able to drain her secretions into her stomach. Doctors had suggested that the motility effect of the oesophagus to ‘squeeze’ food downwards had been affected by Abby’s brain damage – but this is not a definite diagnosis and still remains speculation. We were also concerned that yet another general anaesthetic would lead to a significant increase in Abigail’s epileptic fitting, but thankfully she only required a light dose and seemed to come through the procedure OK. We won’t bore you with the details, but we were once again very disappointed with the poor bedside manner and lack of communication of staff at Lewisham hospital during Abby’s second stay there. After a few days Abby seemed to be doing OK apart from a few spurious high temperatures and some slight fitting episodes that seemed to self-resolve. We spoke to a very helpful registrar who discussed the possible options for Abigail in her future care and agreed it was best for Abby to return to our local hospital (the Queen Elizabeth) for a better continuity of care from people who knew her best. The paediatric neuro doctors at Guy’s were also consulted at this time to keep them up to date on Abigail’s progress.
Abigail was transferred back to the QE on Wednesday 21st April where she continued for a while on oxygen supplements to get her over her chest infection. At this time, it seemed ironic that Abby was in hospital at all as there really wasn’t a great deal wrong with her. She was almost fully recovered from her aspiration pneumonia, had got a new gastro peg fitted, her seizures didn’t seem too bad and she was continuing to put weight on. Doctors were keeping her in simply to try and get to the bottom of her secretion problem. During the course of the next week though, Abby seemed to deteriorate quite a bit in terms of her fitting.
After her first spell on the neurological ward at Guy’s hospital in March, she’d been prescribed a drug called Midazalam which was used to stop prolonged fitting episodes. Abigail had not needed this drug at all until a seizure on her last day at Lewisham on Tuesday 20th April. After her transfer to the QE, Abby seemed to be having more and more fitting episodes such that she required Midazalam intervention on several occasions, often more than once in a day. Now the focus changed from the secretion issue to one of battling against recurring seizures once again. In the meantime, we were all aware that without a surgical solution to Abby’s pooling saliva secretions, she constantly lived with the threat of aspirating some mucus onto her lungs again and causing another dangerous chest infection.
Abigail’s fitting was very bad last Tuesday (27th) and she was cluster-fitting all night. This meant that she would fit quite considerably with a very high heart rate and distonic movements for several minutes before sleeping for around one minute. She’d then wake and fit again. Abby was given Midazalam once more and had one of her anti-convulsants doses increased. Doctors were of the opinion that Abby had either put on sufficient weight for her to have outgrown her drug dosages or that the very nature of her fits had changed again and that alternative medications would have to be found. As one consultant put it to us: “Abigail may simply have moved the goalposts again”.
During this period Abigail had been fitted with foot splints and was using a flat lying board, both designed to help with her limb physiotherapy and offer all round body support. Abby had also been taken off oxygen after recovering fully from her chest infection. After her bad night of fitting, Abigail’s consultant spoke with doctors at Guy’s to get their recommendation as to how to proceed with her seizure medication. Guy’s were concerned at the recent increase in seizures and the fact that Abigail seemed to be back to a condition where she was not often awake and not fitting. It came as very little surprise to us that Guy’s wanted to monitor Abby for themselves and so she was transferred to back to the specialist paediatric neurological ward at Guy’s on Wednesday (28th April). This was clearly a setback but we knew that the care and level of expertise at Guys’ meant that it was the best place for Abby to be.
Wednesday (admission day) and Thursday saw Abigail continue to have bad periods of seizure activity. Abigail was given an EEG brainwave scan to monitor cerebral activity before and during a fit, but unfortunately she was reasonably settled during the scan and not a lot of new information was gleaned! Abby will also undergo an ECG scan to monitor her heart next week as doctors are currently a little concerned at the her high heart rate when at rest. She also underwent a chest x-ray to make sure that her lungs are now fully clear of infection and they are. Swabs were also taken to continue to monitor her MRSA infection, one of her anti-convulsant doses was increased again and another medication was stopped altogether.
Yesterday (Friday) Abby seemed a little more settled when we went to see her and Nix and I both had a chance to hold Abby. Although she wasn’t perfectly relaxed, she was awake and not fitting and certainly seemed to respond to speech, music and being held. Overnight there were some more fitting episodes but this morning (Saturday 1st May) Nix took the children in to see Abby and had a lovely morning. Abby was even more relaxed and enjoyed being held and bathed. Having tinkered slightly with Abby’s medication to good effect, doctors have now said that they will keep her dosages reasonably stable for the next week and monitor Abigail closely. She’ll then have a full review of her care at the end of this coming week. A movement disorder specialist will also see Abigail this week and hope to provide some input into Abby’s non-epileptic abnormal movements.
Although this latest period of seizure activity has not been as bad as in the past, we are hoping that the medical staff at Guy’s can once again get Abigail quickly onto a more stable routine and medication regime. We don't yet know what (if anything) will happen over any solutions to her ‘frothing’ secretions problem.
All this left everyone wondering why it was that Abigail did not seem able to drain her secretions into her stomach. Doctors had suggested that the motility effect of the oesophagus to ‘squeeze’ food downwards had been affected by Abby’s brain damage – but this is not a definite diagnosis and still remains speculation. We were also concerned that yet another general anaesthetic would lead to a significant increase in Abigail’s epileptic fitting, but thankfully she only required a light dose and seemed to come through the procedure OK. We won’t bore you with the details, but we were once again very disappointed with the poor bedside manner and lack of communication of staff at Lewisham hospital during Abby’s second stay there. After a few days Abby seemed to be doing OK apart from a few spurious high temperatures and some slight fitting episodes that seemed to self-resolve. We spoke to a very helpful registrar who discussed the possible options for Abigail in her future care and agreed it was best for Abby to return to our local hospital (the Queen Elizabeth) for a better continuity of care from people who knew her best. The paediatric neuro doctors at Guy’s were also consulted at this time to keep them up to date on Abigail’s progress.
Abigail was transferred back to the QE on Wednesday 21st April where she continued for a while on oxygen supplements to get her over her chest infection. At this time, it seemed ironic that Abby was in hospital at all as there really wasn’t a great deal wrong with her. She was almost fully recovered from her aspiration pneumonia, had got a new gastro peg fitted, her seizures didn’t seem too bad and she was continuing to put weight on. Doctors were keeping her in simply to try and get to the bottom of her secretion problem. During the course of the next week though, Abby seemed to deteriorate quite a bit in terms of her fitting.
After her first spell on the neurological ward at Guy’s hospital in March, she’d been prescribed a drug called Midazalam which was used to stop prolonged fitting episodes. Abigail had not needed this drug at all until a seizure on her last day at Lewisham on Tuesday 20th April. After her transfer to the QE, Abby seemed to be having more and more fitting episodes such that she required Midazalam intervention on several occasions, often more than once in a day. Now the focus changed from the secretion issue to one of battling against recurring seizures once again. In the meantime, we were all aware that without a surgical solution to Abby’s pooling saliva secretions, she constantly lived with the threat of aspirating some mucus onto her lungs again and causing another dangerous chest infection.
Abigail’s fitting was very bad last Tuesday (27th) and she was cluster-fitting all night. This meant that she would fit quite considerably with a very high heart rate and distonic movements for several minutes before sleeping for around one minute. She’d then wake and fit again. Abby was given Midazalam once more and had one of her anti-convulsants doses increased. Doctors were of the opinion that Abby had either put on sufficient weight for her to have outgrown her drug dosages or that the very nature of her fits had changed again and that alternative medications would have to be found. As one consultant put it to us: “Abigail may simply have moved the goalposts again”.
During this period Abigail had been fitted with foot splints and was using a flat lying board, both designed to help with her limb physiotherapy and offer all round body support. Abby had also been taken off oxygen after recovering fully from her chest infection. After her bad night of fitting, Abigail’s consultant spoke with doctors at Guy’s to get their recommendation as to how to proceed with her seizure medication. Guy’s were concerned at the recent increase in seizures and the fact that Abigail seemed to be back to a condition where she was not often awake and not fitting. It came as very little surprise to us that Guy’s wanted to monitor Abby for themselves and so she was transferred to back to the specialist paediatric neurological ward at Guy’s on Wednesday (28th April). This was clearly a setback but we knew that the care and level of expertise at Guys’ meant that it was the best place for Abby to be.
Wednesday (admission day) and Thursday saw Abigail continue to have bad periods of seizure activity. Abigail was given an EEG brainwave scan to monitor cerebral activity before and during a fit, but unfortunately she was reasonably settled during the scan and not a lot of new information was gleaned! Abby will also undergo an ECG scan to monitor her heart next week as doctors are currently a little concerned at the her high heart rate when at rest. She also underwent a chest x-ray to make sure that her lungs are now fully clear of infection and they are. Swabs were also taken to continue to monitor her MRSA infection, one of her anti-convulsant doses was increased again and another medication was stopped altogether.
Yesterday (Friday) Abby seemed a little more settled when we went to see her and Nix and I both had a chance to hold Abby. Although she wasn’t perfectly relaxed, she was awake and not fitting and certainly seemed to respond to speech, music and being held. Overnight there were some more fitting episodes but this morning (Saturday 1st May) Nix took the children in to see Abby and had a lovely morning. Abby was even more relaxed and enjoyed being held and bathed. Having tinkered slightly with Abby’s medication to good effect, doctors have now said that they will keep her dosages reasonably stable for the next week and monitor Abigail closely. She’ll then have a full review of her care at the end of this coming week. A movement disorder specialist will also see Abigail this week and hope to provide some input into Abby’s non-epileptic abnormal movements.
Although this latest period of seizure activity has not been as bad as in the past, we are hoping that the medical staff at Guy’s can once again get Abigail quickly onto a more stable routine and medication regime. We don't yet know what (if anything) will happen over any solutions to her ‘frothing’ secretions problem.
posted by The Freestones at 3:58 pm
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