No end in sight

It seems like every time I get excited about Sophie finally getting healthy just a few days later she takes a turn  for the worst. I’m starting to think I’m jinxing her recovery. I just posted Monthly Follow-up where I gloat about how great her doctor found her health, that was only a few days ago.

Yesterday morning I had to rush Sophie to the pediatrician. The night before after I put her to bed she refluxed while sleeping and aspirated while trying to catch her breath. We have been having a lot of aspirating incidents lately. Well, after she finally cleared she started coughing and never stopped. It has been raining quite a bit and it seems the rain triggered her asthma to become aggravated AND my biggest fear is coming true…pneumonia. The doctor believes she has the onset of aspiration pneumonia. Of course I started crying, it’s not the first time our wonderful pediatrician has seen me cry. She gave her an injection of rocephin and a 10 day dose of antibiotics, we are praying they work. She was not too pleased with her oxygen stats but feels I am able enough to care for her at home and albuterol does bring her stats back up. She said if it were anyone else she would send me to the hospital straight away. So she went over all the distress signs, again, but made sure I understood that if did not start to clear in the next few days she would have to be admitted. We are steering clear of x-rays and scans unless absolutely necessary because of over exposure and she already had over a dozen x-rays and scans.

Today has been awful! She will not sop coughing, she has been running a fever of 101 all day and she is miserable. My husband called out for me earlier today after one of the episodes because she scared the crap out of him and I’m the only one that knows how to get her to clear. It’s heartbreaking to have to watch your child suffer. If I could take her pain instead I would do it in a heartbeat. I am feeling like there is no end in sight when it comes to this sickness and struggle to basically keep my child alive.

I pray and pray and pray and sometimes I feel like God is ignoring me. I ask him to keep my children in his hands and to please heal my daughter. For brief moments I have felt my prayers being answered but not recently. I feel so much pain for her. I am terrified of losing her. I thought it would get easier as she got older but it’s not, it’s in fact harder. I’ve been crying a lot lately. It just happens, with no warning. Sometimes as I watch her playing and having a hard time using her hand to pick something up and she starts wailing with her super high pitch cry and I start crying. When she is having a rough sensory day and I just cannot calm her, I start crying. As I watch her sleep or try to eat I just start crying. Yesterday right after I called the doctor to bring her in I just started crying and could not stop. I never knew this much pain could exist inside one person. I love her so much it hurts.

Have you ever wanted something so much you would trade your life for it. Well, I do. I want my daughter to be healthy, in no way am I wishing away Cri du Chat Syndrome because that is part of who she is, and yes her having CDC makes my life more painful but what I wish for is her physical health. I wish my daughter’s body could fight off infection. I wish she could enjoy drinking without it getting into her lungs or eating without choking. I wish I could take her anywhere without the fear of someone touching her or her touching a surface that could possibly be contaminated with a bacteria she cannot fight off. I wish I did not have to isolate her from the world.

I did not choose this life but none the less it choose me. I try to be strong for her, for my family and for myself but I cannot carry the weight for everyone. I feel like there is no end in sight. As I lay in bed listening to my precious child breath tonight I will try to regain my strength and faith and I pray she does not end up in the hospital (bacteria central) which is not really a good place for her.

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