Thursday, July 21, 2011

home again

so this week threw us for a little loop. when a "normal" person gets pneumonia...they will have it for about 10 days. justin will suffer the effects for 6-8 weeks. there are already concerns with his lungs (due to the spreading fibrosis) and now his oxygen saturation levels are lower than they need to be. he has been issued an oxygen tank (triple sad face) to use as needed. he will also be required to use it while flying to cleveland next week.

they did this CRAZY test to make sure there was no other infection in his body (he was fever free yesterday but then it went back up today)...and this is how it goes:
they took out his blood (like a BUNCH)...took the white blood cells out of the blood..."tagged" them...put them back...and then watched them on a scanner every six hours.
i have a headache from even thinking about how that would be possible.
it was confirmed that all the infection is lying in his lungs. he is on antibiotics and an inhaler and is now HOME!! they said there was nothing else they could do for him there so he needed to go home and sit tight and rest for cleveland. we have still not heard any preliminary results on the muscle biopsy. we may have to wait until next week...but we are prayerful for just a few answers before then!
justin was pretty bummed about this trip to the hospital...being away from the kids and work and life is really starting to take a toll on him. he didnt really want visitors this time...he is just over it. so we had some really great together have to get pretty creative and silly when you are "locked up" for days at a time. we had a blast and pretty much just crack each other up.
one HUGE praise is that justins swelling is completely gone! not sure if it is the chemo or steroids...but something worked!!! his muscle pain has decreased and his CK levels are down to 1000 (still about 800 over...but hey...we will take it!!)!!! there are still so many other issues and answers we need etc.....BUT these things getting better is such an exciting thing!! we 110% thankful to our Lord for providing some relief.
so my last post about our new was pretty much the truth. this is just our new thing. doctors...tests...more answers...more tests....constant fear of illness...and on and on. can you imagine going through something like this without having God to lean on?
some pretty precious kids got together at the boerne YMCA and had a lemonade stand for justin!! how crazy adorable is that!!!??? thank you so much pontillo, bourgeois, wells, davis, amerman and malouf families for setting this sweet event up! we love all of your kids dearly and are so blessed that they wanted to help out mr. justin!!

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