Today is Tues, it has been a pretty long day for us. We have been learning a lot about all the new care Carson is going to need at home. We have also been working on paper work and phone calls to get as much help as we can at home. CMH has had us in complete control over Carson's meds, feeds and care today...we have to prove to them that we are comfortable doing it all so we can take him home. You see, we are coming home with an oxygen machine, O2 sat machine, and a feeding tube. Carson has been requiring a little drip of oxygen most of the day, and could take weeks to a month to ween him off it. We have also been talking about the possibility that Carson has been aspirating (we have been thinking he has been micro aspirating for a few months, we have been thickening his formula to help this) his aspirations may have also contributed to his lung distress. With all of this up in the air we have decided not to feed him threw the mouth as it could make him worse. We do have a swallow study scheduled here in a few weeks to see for sure if he is aspirating, the outcome to this will bring more decisions Jeff and I will have to make.
Thank you for all of your prayers, support and help. I know there have been many to offer their help with dinners, and other miscellaneous help in the next few weeks as we get readjusted. We appreciate this VERY much, a few less things we have to worry about.
Love, Sarah, Jeff and Carson