Sunday, July 12, 2009
3/16/09 Tomas has spent three episode-free nights and gets to go home today. I am slowly stepping down from high alert and beginning to relax a little. His airway still obstructs but much less often and for a much shorter period of time since the reflux is not an issue anymore. He may need more intervention later on but right now the idea is to let him get bigger and stronger and see if he outgrows it. Separately, He can not feed by mouth anymore since he aspirates (swallows into his lungs). He is feeding through the tube that goes directly to his stomach. We will get a pump to run his food through when we leave. In 4-6 months he'll be retested to see if he can swallow properly. We also found out he has mild hearing loss in both ears from liquid buildup in his middle ears, most likely caused by the severe reflux. He will need tubes placed but once his ears drain his hearing should be fine and it should not be an issue again. He has lots of follow ups and needs lots of care but we are all looking forward to some wire free, cuddle filled time at home. I will keep you all updated.