***This is a post we hoped to post last week, but did not have the time to complete until now....
After our discussion on last Tuesday, in regards to needing a few more nursing hours each day, the hospital case manager went to work on resubmitting information to the state for approval. She really thought that when Elias was discharged from the NICU, his care needs were slightly under estimated. After reviewing his progress and situation during this recent admission to the hospital, her recommendation was for 12 hours of nursing per day, awake & alert care. This was 2 hours more everyday than we were receiving. We were even willing to be content with this for 5 of the 7 days. The state denied the request! Our REM case manager told me on the phone yesterday that she did not think this to be an over zealous request, simple and justified. She said, "unfortunately this was just a case of poor timing." With the state medicare/medicaid system slapped with recent budget cuts to compensate for an overwhelming budget deficit, she stated, "that this is a trend we can expect to see often." She continued to tell us that, "if this would have been a month ago, there probably would have not been a problem." When the nurse practitioner came and told me the news of the rejection, I felt like I was punched in the stomach. Then the discussion of maybe going to the transitional hospital (the one we did not want to go to from the NICU) was discussed. "Let him get a little bigger and more stable, then bring him home." I'm not even going to get into all the reasons THAT was a bad idea. It is not about not being able to care for him at home, it is about having to spend 16 hours in the ER twice in one week in addition to the 9 specialists, doctors, and therapists we have to see. It is about being awakened in the middle of the night to put a G-tube back in or because he vomited. It is about having to print out a daily agenda so you do not forget to do something important, including his medicines. Lots of parents with children similar to Elias, having medical needs, will tell you it is very overwhelming most of the time. As Lori, one of out VACTERL friends put it:
"My thoughts are with you both and Elias today as you work toward acceptance, clarity, and balance in your lives that now include a child who will certainly often demand more than you as parents have time, energy, resources, etc to give. Luckily, you will find that love goes a long way when the dishes are left undone, meals never made, laundry stacked to the ceiling, and the pump beeping with the 57th occlusion of the day. Some parents of kids with medical needs call it finding your "new normal" for us it has been more like accepting that there will be no new normal and that life will change daily."
Very well spoken and very true. However, the basis for comparison is still to the "normal" baby with a cookie cutter stamp of time for different medical needs. This update is not really about complaining how the system works, but more to inspire someone to help in advocating for children with medical needs, especially against the government. Parents of medical needs children, as Lori stated above, just do not have the time or even the energy to take on another battle to fight. Maybe someone out there is much more political than I, a savvy individual with the desire for a greater cause that might find some interest in this and run with it. I just find it very ironic that they told us we had to have this type of care assistance in order for Elias to go home, but when we said we need a justifiable tiny increase, they decided to turn their backs. The state wanted to make me dependent on them, but they will not be there to help me when I need it, that is what yesterday's decision told me. But when they need help, boy they have no problem turning to me to bail them out with higher taxes!