16 July 2015

Just keep swimming...just keep swimming...

Bennett's been sucking down ibuprofen over here like it's kool-aid.  It's the only thing we can do while we wait to hear from insurance on our request for appeal of denial of his sinus surgery.

He is uncomfortable but keeps moving through it.  "My head is hurting mom.  Can I have some medicine?" is a pretty common request from him right now. Sometimes it is followed by the question, "I thought they were going to fix my head" but often it's pacified with 10ml of ibruprofen taken as soon as possible. 

Late in the day Tuesday, I was contacted by Bennett's CF doctor, a doctor who very closely monitors Bennett's care but who is not directly involved in this situation since Bennett's sinus issues are being cared for by an ENT at a different healthcare facility closer to our home.  Bennett's doctor had wanted to check in and see how she might be able to help.

I might not have otherwise told Bennett's CF doctor for a while what happened with the insurance situation had she not have called on Thursday afternoon (the afternoon of the surgery) to give me the results of a chest x-ray he had received a few days earlier.  

Her call that Thursday afternoon had come at just the very moment I had needed it.  We had just returned home from the hospital and we were just sick over what had transpired.  I told her about how insurance had denied coverage of his surgery and how that it wasn't going to be something we were going to be able to do for a while.  She likely heard my voice crack as I spoke. 

"Ok, well, until it gets worked out, here is something you can do..." she said in a reassuring voice. She went on to suggest increasing Bennett's inhaled Pulmozyme medication to twice daily in hopes he could thin the mucus in his sinuses until we can get the surgery.

My heart has been so incredibly touched by the little ways people have reached out to help. It meant so much to hear Baylor and Academic Health Plans immediately went to work to see about getting him approved for surgery. The love and support Brian and I have received from friends, family and strangers since this happened has been life-giving. Even as I sat for two hours at the doctors office on Monday waiting for the appropriate paperwork, I was encouraged to know a whole community was doing so on social media alongside me.

Another glimmer of love and support came on Tuesday when Bennett's CF doctor reached out to me a few days later asking me how things were going with the approval and how she might be able to help.

I jumped at the opportunity to have her help. I explained we could use a letter from her stating her opinion about the surgery and why it was vital Bennett received surgical care.  

At 12:30AM, as I was just starting to fall asleep, I received an email from her with a 3-page written letter, ready to be placed on letter head and sent to the correct places.  What a gift that was! 

I had expected a medical necessity letter from the coordinating doctor, the ENT, in order to appeal the surgery.  But what I hadn't expected was that another doctor not directly connected to this situation would have taken the time and energy to reach out and contact me to offer her help.

The appropriate parties received her letter first thing yesterday morning. But for now, all we can do is wait. 

As Dora in "Finding Nemo" says, "just keep swimming, just keep swimming." And that's what we are doing as of now. 

The boy's first pet, "Iggy" the fish.  (Iggy for Icthus, the Greek word for Fish.)
Just keep waiting...Just keep waiting...

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