It has been a difficult couple of days as Sophie is fighting off a severe sinus and respiratory infection, yet again. It’s no secret my girl has been dealt a very difficult hand in this life and we have tackled all of her obstacles head on; but now I have begun to feel a bit defeated.
It was barely a month ago that Sophie had onset pneumonia along with sinus and ear infections. She was given a couple of doses of rocephin via injection, a two-week course of an oral antibiotic, steroids and ear drops. And yet here we are again.
After a visit to her ENT yesterday it was decided that we must begin to think out of the box at this point if we are going to keep Sophie alive. The ENT was very saddened by Sophie’s state of health at the visit. He concluded that because of the PCD (lung disease), her body just does not have the ability to fight off any bacteria. And the fact that the frequency of episodes is increasing is a sign that her body is weakening. Her resistance to all basic oral antibiotics only complicates the gravity of the situation. The risks of losing her are increasing and now he feels we need to be more aggressive than ever before.
I was given a choice; either admit Sophie in the hospital for an indefinite period of time or begin nebulized antibiotics permanently. The nebulized antibiotics are not covered by insurance and will become a permanent daily method of treatment and they are not cheap. I opted for the nebulized medicine, I cannot risk her being in the hospital and catching something worse.
Additionally he recommended that Sophie should permanently be home-schooled to limit exposure to bacteria. There is no doubt that home-school is our only option. The total count of doctors who say that sending Sophie to school would be a death sentence is now 4. We all know school and day care are breeding grounds for bacteria, now imagine a child who cannot even fight off the common cold in a room full of bacteria.
Where does that leave me? Devastated. I don’t want to lose my child, I love her with all my heart and soul. It’s so hard to see her suffer. Sophie is such a lively child, always moving around making a mess and always so happy. Yesterday she refused to eat, she barely smiled and just layed there all day. That is not my girl. As much her quirks can drive me crazy, like taking the plastic bowls from the sink because she is obsessed with spinning them; not seeing her do this is heartbreaking. I love her with all her obsessions and sensory needs and I wouldn’t change her for anything except her health. If I could ask God for one thing only for the rest of my life it would be to restore my baby’s health.
Please pray for my girl. If you don’t believe in prayer please send Sophie some positive energy for healing. It will be greatly appreciated!