No big changes for Luke. He has started to self-resolve a few of his Desat spells, but when he has a bigger one that he can't pull out of he needs pretty good assistance to pull out of it. Thank goodness for those good nurses.
Luke's tummy his still distended, it's soft, but still pretty big. We've all thought it would gradually go down and some days it does look better than others, but overall, it really hasn't changed. Because of this, on Monday the doctors want to do an upper GI test. It sounds kind of crazy after what he's already been through, but it's possible that a narrow passage could have developed since his surgery, sometimes caused by scar tissue. We'll start with the simple tests and go from there.
Overall, Luke looks content and rests comfortably. He isn't quite as 'bronze' or 'copper' colored, which is nice. He still has good awake time where he's calmly looking around and he does get agitated at the appropriate times, like when he's being messed with. We're holding him more often now and I manage his wires pretty easily now and just take him in and out of his bed as I like.
As always, we'll keep you posted and we'll have his latest statistics posted on Monday.
Melinda
Luke's tummy his still distended, it's soft, but still pretty big. We've all thought it would gradually go down and some days it does look better than others, but overall, it really hasn't changed. Because of this, on Monday the doctors want to do an upper GI test. It sounds kind of crazy after what he's already been through, but it's possible that a narrow passage could have developed since his surgery, sometimes caused by scar tissue. We'll start with the simple tests and go from there.
Overall, Luke looks content and rests comfortably. He isn't quite as 'bronze' or 'copper' colored, which is nice. He still has good awake time where he's calmly looking around and he does get agitated at the appropriate times, like when he's being messed with. We're holding him more often now and I manage his wires pretty easily now and just take him in and out of his bed as I like.
As always, we'll keep you posted and we'll have his latest statistics posted on Monday.
Melinda
P.S.
This picture was taken by my sister Melissa earlier this week.
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