It's been another busy week and we're both pretty exhausted as we've been preparing for our house move on top of our usual hospital visits & work (for Chris).
Jonathan has been doing well this week although he is still on varying amounts of oxygen that the nurses adjust based on how hard he seems to be working to breathe and his oxygen saturation levels.
None of the doctors seem to be able to figure out exactly what is causing Jonathan's breathing problems but their best guess is that it is mainly due to his heart problems. The cardiologists however are still scratching their heads about how exactly the 2 problems are linked as the heart condition that Jonathan has been diagnosed with is not usually associated with breathing difficulties.
The type of heart condition Jonathan has also does not usually need to be treated with diuretics and so the cardiologists aren't convinced that the diuretics are actually helping Jonathan's breathing problems even though they seemed to be working over the last few weeks. The cardiologists' plan is therefore to gradually wean Jonathan off his diuretics and to put him on Propranolol, which we were told may possibly help his circulation and therefore his breathing and is a drug that was used in the "old school" way of treating heart conditions like Jonathan's. The cardiologists will then observe Jonathan for a week before readjusting his medication if needed.
The doctors also want to get Jonathan transferred back to our local hospital (the Royal Free), seeing that they are not planning for him to undergo any more surgery at the moment and so he would not need the expertise of St Thomas's for now. We would then go back to see the cardiologists and general surgeons at St Thomas's for regular visits so that they can keep an eye on his progress and plan his future surgeries. So far there are no free cots in the paediatric unit at the Royal Free so we're still at St Thomas's until there is a space.
We'll also be moving house this weekend. As we've yet to get a phone line and internet set up at our new flat, we will probably be unable to blog until we get connected again...but never fear, if there is any big news on the Jonathan front, we will find a way to update our blog and we'll be back on the blogging bandwagon as soon as we get the broadband up & running at the new place!
For now, here are some photos of Jonathan from the past week and hopefully they'll give both grandparents and non-grandparents a good dose of Jonathan until the next post!
Bath time - this photo has been censored with strategically-placed bubbles...
This is why they warn you about working with babies - we took multiple shots but couldn't manage to get any photos where he was not pulling a face or moving around in a blur.
Hanging around with daddy:
Dreaming of having tea with the queen:
Hanging out with his floppy dog friend:
Jonathan's kung fu master pose:
Jonathan has been doing well this week although he is still on varying amounts of oxygen that the nurses adjust based on how hard he seems to be working to breathe and his oxygen saturation levels.
None of the doctors seem to be able to figure out exactly what is causing Jonathan's breathing problems but their best guess is that it is mainly due to his heart problems. The cardiologists however are still scratching their heads about how exactly the 2 problems are linked as the heart condition that Jonathan has been diagnosed with is not usually associated with breathing difficulties.
The type of heart condition Jonathan has also does not usually need to be treated with diuretics and so the cardiologists aren't convinced that the diuretics are actually helping Jonathan's breathing problems even though they seemed to be working over the last few weeks. The cardiologists' plan is therefore to gradually wean Jonathan off his diuretics and to put him on Propranolol, which we were told may possibly help his circulation and therefore his breathing and is a drug that was used in the "old school" way of treating heart conditions like Jonathan's. The cardiologists will then observe Jonathan for a week before readjusting his medication if needed.
The doctors also want to get Jonathan transferred back to our local hospital (the Royal Free), seeing that they are not planning for him to undergo any more surgery at the moment and so he would not need the expertise of St Thomas's for now. We would then go back to see the cardiologists and general surgeons at St Thomas's for regular visits so that they can keep an eye on his progress and plan his future surgeries. So far there are no free cots in the paediatric unit at the Royal Free so we're still at St Thomas's until there is a space.
We'll also be moving house this weekend. As we've yet to get a phone line and internet set up at our new flat, we will probably be unable to blog until we get connected again...but never fear, if there is any big news on the Jonathan front, we will find a way to update our blog and we'll be back on the blogging bandwagon as soon as we get the broadband up & running at the new place!
For now, here are some photos of Jonathan from the past week and hopefully they'll give both grandparents and non-grandparents a good dose of Jonathan until the next post!
Bath time - this photo has been censored with strategically-placed bubbles...
This is why they warn you about working with babies - we took multiple shots but couldn't manage to get any photos where he was not pulling a face or moving around in a blur.
Hanging around with daddy:
Back in the bouncer again but looking less dejected this time:
Dreaming of having tea with the queen:
Hanging out with his floppy dog friend:
Jonathan's kung fu master pose:
3 comments:
Dear Chris and Tracy
We all think Jonathan is such a beautiful baby.
Uncle Rod, Auntie Grace, Jerusha and Joshua
Eeep! He's so cute! And I was so worried he'd end up looking like Chris. :P I kid, I kid.
Gyaaaah! Jono is the cutest! I showed some photos to my friends and one of them said that he was born with an anal fistula(born with two bum holes instead of one)so we know who stole Jono's... And they all said he was incredibly cute too :)
I can't wait to see him in real life!
Love you guys heaplies!
Jocelyn.
i'm with jocelyn- GYAAAHH! describes exacTly how cute he is! i LOVE the pic of him dreaming of tea with the queen! good luck with the move and getting a bed in the hospital closer to home. thinking of you guys lots :) xxx
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