Every three months, we visit Leo's pulmonologist (respiratory doctor) for a check up - part of the wonderful requirements of having a trach. We arrived at 1pm and didn't leave until 4:30 so a very long visit but overall a good one. We are making some changes to Leo's overall care schedules but in a good way. Our nursing agency is making the doctors document every little specific care item in what they call an "order" for Leo now so it's a bit of a pain. Apparently they got audited somehow and now instead of us telling the nurses what cares Leo needs, it must come directly from a doctor to the nurses. I feel like the whole program we are under continues to take away parents rights but we are luckily to have doctors that are willing to work with us and are supportive about providing care to Leo in what we think is the best way. As an example, we spent 15 minutes trying to word something generically, yet be specific, about how Leo's meals are prepared and given to him so that we have the flexibility to feed him what we want.
So in terms of changes to his cares, we are basically going to eliminate feeding Leo in the middle of the night to get him on a regular feeding schedule. Respiratory wise we will get him back up to 8 hours a day on his Passy Muir valve and slowly start to reduce his dependency on the ventilator at night. Not a whole lot of changes but headed in the right direction.
On another good note, we got our nursing hours approved again for the next 6 months which we were very happy to hear. We were able to avoid a visit to reassess Leo so a huge relief considering all the cuts that our Governor is wanting to make to programs like DSCC (Department of Specialized Child Care)
Now we just need to get through surgery on Thursday. Like Kate, it breaks my heart that we have to do this but we are out of choices to ensure the long term care of Leo's eye sight. Hopefully it wont be as bad as we think and like everything else we have encountered, we look back on this as the right decision.
This is a progressive news which is good to me ;) assuming cutting a night feeding may take some stress of the nightly care? Grateful you guys have the next six months secured, I didn't know this was a concern. praying for a good day tomorrow considering.
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