Since arriving home in May from the hospital stay, the boy’s care plan has escalated to include a variety of respiratory care.  Add that to the G-tube/constant feed pump, the special diet, and multiple meds throughout the day, and I started to wonder if we would officially qualify for nursing care.

And it seems we do!  There has been a lot of paperwork, and lot of phone calls, a few home visits, and a lot of praying.  But the boys now qualify for a medical waiver program.  Obviously the downside to that is that they were sick enough to qualify.  But the upside is – we have a new advocate on our team to help us provide the best care possible!  If you know what state we live in (and no, I don’t mean the state of confusion) you’re probably wondering how in the world they could pay for it.  And the fantastic answer is – they won’t.  We’ll get a chunk of hours through insurance. The even better news – D will be our nurse!  But in addition to D, we’ll have another person trained and familiar with the boys.  I still have a lot to learn about the care plan, we are anxious to meet the 2nd nurse who will care for the boys on occasion, and as always we are a little leery of change.   But all in all – this is fantastic news!  I’m feeling very grateful this evening.  Any parent who has tried for this (successfully or not) knows the struggle and hoops it entails.    This wasn’t easy at all.  But I am thrilled for the outcome, and excited to learn more!
   
 

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