Tough Discussions

Noah is still struggling and we are not sure what is really the underlying issues to his new 02 requirements...we are hoping and praying its med related and Boston is lowering one of his seizure meds to see if this makes him less sleepy and will breathe more efficiently....Boston did have encouraging news that they check his Co2 every visit as well and there C02 levels have never been over 27. So this might be complications due to siezure meds or this might still be a new pulminary issues. If playing with some of his siezure meds doesn't work however we will need to see a pulminologist and find out our options.....we spent 2 hrs at the PCP last night discussing some of the options in line in the future and talking about future preparations :( Lets hope and pray these preparations are not needed for a long while!!!