Friday, September 30, 2011
What A Difference A Day Makes....
I will do my best to put this ALL in words but might have a hard time rambling...
I will start by saying this... Devin is doing AMAZING!!! he looks great, feels great emotionally and physically, and his health has NEVER been more stable.. He loves school!! and is thriving very well in his school setting. ALL in ALL in a matter of six weeks or so we have achieved some measure of balance and I once again have a HAPPY GO LUCKY LITTLE BOY... WHO IS ONCE AGAIN LOVING LIFE!!! after a very long struggle!!!
Ok, all that being said on Wednesday I received a phone call from the transplant team... they wanted labs done on Thursday! My first thought was.. ggrrr can't we just leave well enough alone!! but they did not feel the same.... they proceeded to add a laundry list of labs to be done.. By 11 we had the results and Devins Liver enzymes were through the roof!!! You know things are bad when you hear form the doctors staff to say... be available all day because the doctors will need to talk to you at some point!!!
When speaking to both teams I STRESSED... that Devin is doing so well!!! He is HAPPY & He is LIVING!!!!!!!!! Both teams believe this is a drug issue... but these drugs are what are allowing him to live!! :( I am so mad!!! so angry!! so frustrated!!! honestly I can't put into words what I feel!!
To help you all understand the magnitude of the situation I will share with you a couple of phrases that were used throughout the day.... "we are headed for irreversible Liver failure".... "Devin's Liver has no reserve, if he should get even the simplest of cold now... things will not be good".... and straight form the transplant team... "if we change nothing or can't find other meds to work... and if he stays completely healthy ( no other illnesses or complications) he will die of Liver failure in 6 months to a year!!
I can't say anymore... All I ask is that you pray for him... for us... as we meet with doctors today! as I spend endless time on the phone trying to coordinate care between here and DC.. As I try to coordinate a plan that allows my little boy to live without having to put his life on the line!!!
PLEASE PRAY FOR ANSWERS OVER THE NEXT COUPLE OF DAYS!!!!!! we MUST re-draw labs this afternoon and will meet with the first doctor at 11:30!!!
I will start by saying this... Devin is doing AMAZING!!! he looks great, feels great emotionally and physically, and his health has NEVER been more stable.. He loves school!! and is thriving very well in his school setting. ALL in ALL in a matter of six weeks or so we have achieved some measure of balance and I once again have a HAPPY GO LUCKY LITTLE BOY... WHO IS ONCE AGAIN LOVING LIFE!!! after a very long struggle!!!
Ok, all that being said on Wednesday I received a phone call from the transplant team... they wanted labs done on Thursday! My first thought was.. ggrrr can't we just leave well enough alone!! but they did not feel the same.... they proceeded to add a laundry list of labs to be done.. By 11 we had the results and Devins Liver enzymes were through the roof!!! You know things are bad when you hear form the doctors staff to say... be available all day because the doctors will need to talk to you at some point!!!
When speaking to both teams I STRESSED... that Devin is doing so well!!! He is HAPPY & He is LIVING!!!!!!!!! Both teams believe this is a drug issue... but these drugs are what are allowing him to live!! :( I am so mad!!! so angry!! so frustrated!!! honestly I can't put into words what I feel!!
To help you all understand the magnitude of the situation I will share with you a couple of phrases that were used throughout the day.... "we are headed for irreversible Liver failure".... "Devin's Liver has no reserve, if he should get even the simplest of cold now... things will not be good".... and straight form the transplant team... "if we change nothing or can't find other meds to work... and if he stays completely healthy ( no other illnesses or complications) he will die of Liver failure in 6 months to a year!!
I can't say anymore... All I ask is that you pray for him... for us... as we meet with doctors today! as I spend endless time on the phone trying to coordinate care between here and DC.. As I try to coordinate a plan that allows my little boy to live without having to put his life on the line!!!
PLEASE PRAY FOR ANSWERS OVER THE NEXT COUPLE OF DAYS!!!!!! we MUST re-draw labs this afternoon and will meet with the first doctor at 11:30!!!
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1 comment:
OMG Col...i don't know what to say, i had a hard time hearing what the doctors said...xoxo
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