Infection better, but transfer to Lewisham
Apologies that it’s been just over a week since our last update on Abigail – it’s been a hectic time with many developments and not a lot of time to write. Our last update was on Saturday 10th just a few days after Abby had been re-admitted to the QE with a chest infection. She’d spent only 48 hours at home with us after her discharge. It was awful seeing Abigail really suffer with the infection: her respiration rate was up to 72 breaths a minute, her heart rate was extremely rapid (almost 200 beats per minute) and Abby was admitted with a temperature of 39.2C (102.5F) which had risen from normal in the ten minutes it had taken Nix to drive to the hospital. She was very sick indeed.
Thankfully she began to respond to antibiotics last Sunday and her respiration, HR and temperature began to calm down. Not only did this mean that Abby was on the mend, but it also cleared up a concern that her chest infection was an MRSA infection. With Abby beginning to respond to conventional antibiotics (and MRSA resistant to those) we knew this wasn’t the case.
As last week drew on and Abby made steady progress in fighting the infection in her lungs, it became clearer just how ill she was on that Friday and Saturday. As we spoke with Abigail’s consultant – who thankfully was the doctor on call when we took Abby back in – it was apparent that Abby had aspirated (inhaled) some of the frothy mucus in her throat. It’d been our suspicion from right after the operation that this was happening because the Nissens surgical procedure to ‘tighten’ up the valve at the top of her stomach was too tight. Although it was effective in stopping Abby’s vomiting, we reckoned that it also prevented anything from travelling down the oesophagus into the stomach. Her secretions (saliva) would therefore simply ‘back up’ and pool in her throat causing her to panic, choke, and eventually aspirate it into her lungs causing an infection. Abby’s consultant agreed that this was exactly what had happened. Abigail had actually suffered from aspirational pneumonia and things had been extremely serious for her until the antibiotics had kicked in. Many months back, we had asked another consultant what it was that Abigail might succumb to in the event of her premature death. He told us that severe epileptic seizures can kill and that infections can also prove fatal – particularly chest infections.
Yet again Abby seems to have fought off another very serious situation. We’ve simply lost count of the number of times that her condition has had the real potential to result in tragic consequences – but she keeps on fighting! The incredible irony of last week was that she had virtually no seizure activity at all during this time – not even with a high temperature.
Towards the end of last week Abby got much better and doctors gradually reduced the levels of oxygen given to help her breathing. With the chest infection all but behind her, doctors now wanted to focus on attempting to correct whatever the problem was with her ‘frothing’ secretions. On Thursday Abby’s consultant spoke with the paediatric surgeons at Lewisham hospital (where Abigail was operated on) to get their take on what might be appropriate. In a very surprising and exceptional case of NHS efficiency Abigail was transferred that same day to Lewisham pending investigative tests. Nix and I were a little anxious about this given our previous poor experience with the care at Lewisham, but we were also pleased that efforts to find a solution to Abby’s problem were moving along quickly. Everybody was concerned that Abigail could very easily aspirate mucus again and suffer another infection unless treated in some way.
Last Friday, Abby was given a barium swallow study which monitors exactly what movement there is through the oesophagus and into the stomach. This showed that there was indeed very little getting into the stomach and also that there was virtually no movement in the oesophagus to ’squeeze’ food and liquid downwards. It’s thought that this natural assistance that the body gives to digestion has been destroyed by Abby’s brain damage.
Tomorrow (Monday) Abigail will go down to theatre once again to undergo an investigative endoscopy and possibly attempt to ‘dilate’ the top of the stomach valve to allow food through. This afternoon we all went to visit Abby. She still has quite a chesty cough but her breathing is almost normal now. She appeared a bit twitchy at times; as though she might be mildly fitting but nothing too serious. We just hope that the procedure tomorrow is a straightforward and successful one. It’ll be another busy and hectic day tomorrow – we need to visit Abby first thing in the morning to see her and give our consent to the procedure, and it’s also Rebekah’s fifth birthday tomorrow with a big party in the afternoon!
Needless to say, any predictions on when Abby might be allowed home again won’t be made until after this next procedure.
Thankfully she began to respond to antibiotics last Sunday and her respiration, HR and temperature began to calm down. Not only did this mean that Abby was on the mend, but it also cleared up a concern that her chest infection was an MRSA infection. With Abby beginning to respond to conventional antibiotics (and MRSA resistant to those) we knew this wasn’t the case.
As last week drew on and Abby made steady progress in fighting the infection in her lungs, it became clearer just how ill she was on that Friday and Saturday. As we spoke with Abigail’s consultant – who thankfully was the doctor on call when we took Abby back in – it was apparent that Abby had aspirated (inhaled) some of the frothy mucus in her throat. It’d been our suspicion from right after the operation that this was happening because the Nissens surgical procedure to ‘tighten’ up the valve at the top of her stomach was too tight. Although it was effective in stopping Abby’s vomiting, we reckoned that it also prevented anything from travelling down the oesophagus into the stomach. Her secretions (saliva) would therefore simply ‘back up’ and pool in her throat causing her to panic, choke, and eventually aspirate it into her lungs causing an infection. Abby’s consultant agreed that this was exactly what had happened. Abigail had actually suffered from aspirational pneumonia and things had been extremely serious for her until the antibiotics had kicked in. Many months back, we had asked another consultant what it was that Abigail might succumb to in the event of her premature death. He told us that severe epileptic seizures can kill and that infections can also prove fatal – particularly chest infections.
Yet again Abby seems to have fought off another very serious situation. We’ve simply lost count of the number of times that her condition has had the real potential to result in tragic consequences – but she keeps on fighting! The incredible irony of last week was that she had virtually no seizure activity at all during this time – not even with a high temperature.
Towards the end of last week Abby got much better and doctors gradually reduced the levels of oxygen given to help her breathing. With the chest infection all but behind her, doctors now wanted to focus on attempting to correct whatever the problem was with her ‘frothing’ secretions. On Thursday Abby’s consultant spoke with the paediatric surgeons at Lewisham hospital (where Abigail was operated on) to get their take on what might be appropriate. In a very surprising and exceptional case of NHS efficiency Abigail was transferred that same day to Lewisham pending investigative tests. Nix and I were a little anxious about this given our previous poor experience with the care at Lewisham, but we were also pleased that efforts to find a solution to Abby’s problem were moving along quickly. Everybody was concerned that Abigail could very easily aspirate mucus again and suffer another infection unless treated in some way.
Last Friday, Abby was given a barium swallow study which monitors exactly what movement there is through the oesophagus and into the stomach. This showed that there was indeed very little getting into the stomach and also that there was virtually no movement in the oesophagus to ’squeeze’ food and liquid downwards. It’s thought that this natural assistance that the body gives to digestion has been destroyed by Abby’s brain damage.
Tomorrow (Monday) Abigail will go down to theatre once again to undergo an investigative endoscopy and possibly attempt to ‘dilate’ the top of the stomach valve to allow food through. This afternoon we all went to visit Abby. She still has quite a chesty cough but her breathing is almost normal now. She appeared a bit twitchy at times; as though she might be mildly fitting but nothing too serious. We just hope that the procedure tomorrow is a straightforward and successful one. It’ll be another busy and hectic day tomorrow – we need to visit Abby first thing in the morning to see her and give our consent to the procedure, and it’s also Rebekah’s fifth birthday tomorrow with a big party in the afternoon!
Needless to say, any predictions on when Abby might be allowed home again won’t be made until after this next procedure.
posted by The Freestones at 11:31 pm
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