15th January 2011 - To Family
Hi everyone,
Jonathon had an operation yesterday to bring his large intestine closer to the skin, and then make a hole so the waste from his gut could be emptied. I think the doctors called it a stoma. He was under general when it was done, and he's been a bit groggy since then. As part of the procedure, they hooked him up to a breathing machine, and were hoping to remove it sometime during last night when he starts breathing on his own again. When we saw him last night, he was still connected, but started to open his eyes and look at us which was quite exciting. He keeps sucking on the breathing tube that's going in his mouth - he must be really hungry!
The doctors that performed the operation said it went well, but we were told it would take a few days to see whether it's working. Once it's working, Tracy can start feeding him. At the moment, he's being hydrated by a sugary-water drip.
They also performed a few other tests on Jonathan yesterday, and found that his spine and ribs don't look quite normal - the consultant said he looked a bit compressed vertically, and that some of his ribs were fused together. They don't think that's a problem right now, but something to keep an eye on as he develops.
They're going to get the geneticists involved to see why he's developed the way he has, and to try and give us an idea of how he'll develop in the future.
Once he stabilises, they'll get all the specialists together to see what should be done next - at the moment, although his heart and brain still have problems, they seem to be stable.
Tracy's continuing to recover very well - she's been up and about walking across the floor to visit Jonathan every few hours. The doctors are impressed by how quickly she's been up and about.
Anyway, one day at a time! Jonathan and Tracy's care so far has been excellent, and we're glad that everyone's taking time to try and explain everything to us. Hopefully today he'll be off the breathing machine and we can play with him again.
Thanks for all your prayers,
Love,
Chris and Tracy
Hi everyone,
Jonathon had an operation yesterday to bring his large intestine closer to the skin, and then make a hole so the waste from his gut could be emptied. I think the doctors called it a stoma. He was under general when it was done, and he's been a bit groggy since then. As part of the procedure, they hooked him up to a breathing machine, and were hoping to remove it sometime during last night when he starts breathing on his own again. When we saw him last night, he was still connected, but started to open his eyes and look at us which was quite exciting. He keeps sucking on the breathing tube that's going in his mouth - he must be really hungry!
The doctors that performed the operation said it went well, but we were told it would take a few days to see whether it's working. Once it's working, Tracy can start feeding him. At the moment, he's being hydrated by a sugary-water drip.
They also performed a few other tests on Jonathan yesterday, and found that his spine and ribs don't look quite normal - the consultant said he looked a bit compressed vertically, and that some of his ribs were fused together. They don't think that's a problem right now, but something to keep an eye on as he develops.
They're going to get the geneticists involved to see why he's developed the way he has, and to try and give us an idea of how he'll develop in the future.
Once he stabilises, they'll get all the specialists together to see what should be done next - at the moment, although his heart and brain still have problems, they seem to be stable.
Tracy's continuing to recover very well - she's been up and about walking across the floor to visit Jonathan every few hours. The doctors are impressed by how quickly she's been up and about.
Anyway, one day at a time! Jonathan and Tracy's care so far has been excellent, and we're glad that everyone's taking time to try and explain everything to us. Hopefully today he'll be off the breathing machine and we can play with him again.
Thanks for all your prayers,
Love,
Chris and Tracy
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