When I thought of children in the hospital prior to this experience I always assumed that when they are sick they get help and they get it fast. Now that I have lived here for a month my eyes have been opened to a new reality. A reality where children wait for insurance approvals and beuqacratic red tape to be removed before they get the life saving procedures that they so desperately need. I've seen insurance companies cut coverage because the child has been told by doctor's, "there is nothing more that we can do." I've seen a child sent home without any way to get him home safely with the oxygen he needs. I've seen parents have to raise $10,000 just to get their child home to die and be comfortable on the ride home. When did children become an insurance policy number? When did following policy and procedure become the priority over saving a child's life and giving them the dignity they deserve?
It's ugly, but it's true. Shannon needs a bone marrow transplant. She was strong and ready for chemo last week, but medicaid needed to "process and review" her case before approving her procedure. So while Shannon waited she developed a Staph infection. Every bone in my body went into action. I couldn't believe that insurance was what had held up the procedure to save her life. I asked her HemOnc team nicely to please expedite the process and call medicaid. I was told, "there are people on the other end of the phone and if we push I have seen them push back and take longer." I wanted to throw up!
That night I went over and over in my head how I would ask the team to move forward with urgency, but every time I thought of my speech I would lose my peace. God clearly spoke to back down and let Him move. The next morning during rounds Shannon's team said they would call medicaid and speak personally to the physicians of the review committee for Medicaid. I didn't even have to say a word. That afternoon the news came that before her doctors could even place that call Medicaid came back with an approval. In less than a week Shannon's procedure had been approved!!! God moved a mountain today.
The next part of news was heartbreaking. Shannon's Staph infection was not the type of Staph they had originally thought it was. Even with Medicaid's approval Shannon will need two surgery's, one Pic Line procedure and 3-4 days of antibiotics. The Staph infection that Shannon's body is battling is an aggressive type, 1 of 4 that require chest lines to be removed. Before chemo can start Shannon will need 1 surgery to remove the line, 1 procedure to add a Pic Line in her arm for rounds of 4 antibiotics to clear the infection, and a 2nd surgery to place a new line in her chest.
Tonight was rough. Shannon could not hold her oxygen above 83 (normal is 98-100%), she was pitting in her chest because of how hard she was working to breathe, her chest had to be suctioned out by the respiratory team and most of the time Shannon just cried and screamed. She has been given a diarrhetic because she is retaining some fluid. She is connected to oxygen round the clock. Her chest line has puss and looks swollen. She will need to have it cleaned around 2am. She is on 4 antibiotics to fight the Staff infection. But...for now she is struggling less to breathe and is finally sleeping.
God has this. It is the worst thing to go through. I have met a mother whose 12 year old daughter has an aggressive form of Leukemia and I've cried with her. I've seen one child go back to be with Lord and wept with his father. It's a hard place to be. But we trust the Lord that this will be a place of healing for Shannon. His ways are greater than I can understand. He is the author of the air, the designer of the stars, the giver of life and I love Him with my whole heart. He is keeping us in perfect peace while we wait.
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