Nathaniel was discharged from PICU to home last Friday. We were encouraged to return to our normal respiratory care regiment: three breathing treatments and two airway clearance treatments per day. By Saturday morning, we realized that was not going to provide the support Nathaniel needed. After offering our full arsenal of treatments, oxygen support, and a trip back to emergency, Nathaniel just yesterday settled back into his normal respiratory care without oxygen.
Midway through Nathaniel's hospitalization, Rich found out he was headed to Kansas for work this week. We mentioned this to the doctors, and they tried to get Nathaniel's private duty nursing hours increased. Nathaniel's managed care insurance plan would not authorize an increase.
Although adopted, Nathaniel remains eligible for social services because he was once in state custody. Navigating the system is a challenge for me. I hear a lot of negative publicity about "people who take advantage of the system." I would love to learn how they do it. We have seen a trend of denied services over the last few months. Nathaniel continues to have diagnoses, like aspiration, that validate his increased care needs while at the same time our private duty nursing hours are being whittled away. The insurance company demanded a review every three weeks which was a long and tedious process for both the nursing agency and myself. They demanded Rich's paycheck stubs to prove he was employed full time. Take a day off to go to a specialist appointment or be with Nathaniel in PICU? At the next review, it was questioned if Rich is still working full time or available to offer more care. Always looking for a reason to reduce support.
I was walking through the hall at Children's the morning of discharge and ran into a social worker and a discharge care nurse who have worked on Nathaniel's case in the past. They had not heard he was in the hospital; they stopped me and asked about him. I shared how stuck I felt - knowing he needs better services and not having the time to advocate for those within the managed care plan because I was too busy providing hands on care. They offered some suggestions and a phone number and another nudge to continue to fight for Nathaniel's and our family's needs.
This week in addition to caring for Nathaniel without Rich, a big focus of my energy has also been spent picking up the role of advocate again. I have learned more about the system and what programs might be available for Nathaniel's needs. Thank goodness for the speaker option on my cell phone. It gives me two hands to suction while waiting through a twenty-four minute hold. This morning, I had a two hour meeting with someone who assessed Nathaniel. The meeting took place in my home while I was caring for Nathaniel. The nurse witnessed how many times I suction Nathaniel an hour and how his care often requires four hands, not just two. She closed our meeting offering our family thirty more private duty nursing hours a week. And instead of reviewing in three weeks, she will review just four times a year.
I want to take a big deep breath and rest in this new provision.
It means more help. I can have a day shift nurse Monday through Friday again. It means I no longer have to stop on the highway in rush hour traffic on the way home from a doctor's appointment to suction Nathaniel who just vomited and is coughing and aspirating alone in the backseat.
Yet I know intimately the next hurtles. Conducting nurse interviews. Finding the right nurses. Training. Learning to become a team with strangers. Being vulnerable to have more people in our home more hours of the day.
Last night rocking Nathaniel, I played Matt Hammitt's song All of Me over and over. I have played the song often in the last year. The words are so true to my experience of being Nathaniel's mommy. "Afraid to love something that might break... I can't give you half my heart and pray He makes you whole... Let me recklessly love you, even if I bleed... you're going to have all of me..."
This week, recklessly loving Nathaniel means accepting more help. It mean opening our doors to more agencies. More caregivers. More relationships. More time focused on managing Nathaniel's care team and less time actually with Nathaniel. It means more signatures on HIPPA forms that result in less privacy. It means more help in the nursery, but fewer snuggles between mommy and daddy in their bed. It means more. But in an odd way, it also means less.
