We have new chest tubes in the old holes that are draining. Sounds
like VATS is on hold. The oscillation vent was started and stopped and
he is back on a traditional vent system with nitric oxide. It is working
wonderfully. Unfortunatly that means that his lungs are constricting as
a result of his sickness and he will most likely be on the vent until
his treatments have started working. The hemotologists(they are the
lymphangiomatosis specialists) are concerned about all these lung issues
and the kidney issues that I've forgotten to mention and have asked us
to think about a different treatment since it seems he is
deteriorating. The kidneys aren't as bad as they were 10 days ago but
they are worse than they were yesterday and the day before. We are
hoping it is a result of some renal toxic meds he is no longer on and
they will improve now that is is taking different meds.
Trach will
probably happen later this week. Sedation will still be heavy for a few
weeks at the least. Sounds like he may get a new central line tomorrow
and then a more permanent and tunneled cetral line surgically put into
his chest when he gets the trach.
I hate this so much. I hate that
this is long term problem and it needs long term solutions. I hate how
much medical info I am learning. I was so happy when House was just a tv
show and not my life. I want to bring my baby home and hear him laugh
and watch him run and cuddle on the couch and read books together. I
don't want to be this strong.
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