So another week has flown by in a flurry of activity as we spent the week trying to squeeze in time to get settled at our new place and building flat-pack furniture in between our time at hospital.
Jonathan was much better this week than he was the last week and was only on the CPAP for less than a day before going back to just being on oxygen through the nasal cannula.
However this weekend he was a bit sleepy again, his body temperature was a bit up & down and his blood tests showed that his infection markers went up again so they've restarted him on the antibiotics again as it seems he may have another infection. They don't know where the infection could be and whether he is recovering from it (the markers usually lag a little behind the actual infection) or whether it could get worse so to be on the safe side, he's been moved back up to the Intensive Care Unit where he can be more closely monitored.
During the rest of the week, he had actually been moved to the High Dependency Unit (one step down from the ICU) and had been pretty stable. He only had a couple of incidences where his oxygen saturations went down suddenly and the main problem was getting his feeding started again because his tummy wasn't tolerating his feeds and was producing the greenish gunk (mainly bile) - the same thing as what happened after the operations on his gut. As a result, the doctors have decided to give his tummy a rest for a few days so poor Jonathan is currently on an empty tummy again.
He's also lost quite a lot of weight (600g or so) due to the dramatic events of the past couple of weeks and is down to around 3kg again so the doctors put in a long line for an IV drip so that he can get some much-needed nutrition and calories. As the doctors were having difficulty finding veins in which to put in a cannula for his antibiotics, Jonathan now also has a new cannula in a vein in his scalp - to protect the cannula, the nurses put a little plastic cup over it so it looks like he's wearing a little party hat!
Unfortunately it seems that the only explanation that the doctors have been able to give us for the dramas 2 weeks ago was an infection - they suspect that a bug passed from his respiratory system to his blood stream, and because he's got so little energy in reserve to fight infections because of his other problems, he couldn't tolerate it like a normal person.
We had a difficult discussion this weekend with the senior consultant who told us that what happened might not be an isolated incident, and it might happen again if he gets another infection so we should try and prepare ourselves for it - not in a practical medical sense like learning baby CPR (although that would be useful), but mentally... we're still trying to get our heads around that and all the issues that come with it, given that most babies catch loads of bugs and it's inevitable they get sick at some stage...
Anyway, apart from that, for now we're just happy that he's been soldiering on, and that St Thomas' are doing all they can for him. He got to have a go in his bouncy-chair today, and had a few big cuddles with mum and dad. We also cut his fingernails for the first time yesterday, and gave his hands a good scrub too - he likes to put them in his mouth so they definitely needed it!
We'll send another update soon.
Jonathan was much better this week than he was the last week and was only on the CPAP for less than a day before going back to just being on oxygen through the nasal cannula.
However this weekend he was a bit sleepy again, his body temperature was a bit up & down and his blood tests showed that his infection markers went up again so they've restarted him on the antibiotics again as it seems he may have another infection. They don't know where the infection could be and whether he is recovering from it (the markers usually lag a little behind the actual infection) or whether it could get worse so to be on the safe side, he's been moved back up to the Intensive Care Unit where he can be more closely monitored.
During the rest of the week, he had actually been moved to the High Dependency Unit (one step down from the ICU) and had been pretty stable. He only had a couple of incidences where his oxygen saturations went down suddenly and the main problem was getting his feeding started again because his tummy wasn't tolerating his feeds and was producing the greenish gunk (mainly bile) - the same thing as what happened after the operations on his gut. As a result, the doctors have decided to give his tummy a rest for a few days so poor Jonathan is currently on an empty tummy again.
He's also lost quite a lot of weight (600g or so) due to the dramatic events of the past couple of weeks and is down to around 3kg again so the doctors put in a long line for an IV drip so that he can get some much-needed nutrition and calories. As the doctors were having difficulty finding veins in which to put in a cannula for his antibiotics, Jonathan now also has a new cannula in a vein in his scalp - to protect the cannula, the nurses put a little plastic cup over it so it looks like he's wearing a little party hat!
Unfortunately it seems that the only explanation that the doctors have been able to give us for the dramas 2 weeks ago was an infection - they suspect that a bug passed from his respiratory system to his blood stream, and because he's got so little energy in reserve to fight infections because of his other problems, he couldn't tolerate it like a normal person.
We had a difficult discussion this weekend with the senior consultant who told us that what happened might not be an isolated incident, and it might happen again if he gets another infection so we should try and prepare ourselves for it - not in a practical medical sense like learning baby CPR (although that would be useful), but mentally... we're still trying to get our heads around that and all the issues that come with it, given that most babies catch loads of bugs and it's inevitable they get sick at some stage...
Anyway, apart from that, for now we're just happy that he's been soldiering on, and that St Thomas' are doing all they can for him. He got to have a go in his bouncy-chair today, and had a few big cuddles with mum and dad. We also cut his fingernails for the first time yesterday, and gave his hands a good scrub too - he likes to put them in his mouth so they definitely needed it!
We'll send another update soon.
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