If you have been following for a while now then you know Sophie has had issues with choking episodes since birth. If you are new here you can read this post to give you an idea of what I mean “she choked”.
For four years I have watched my daughter struggle, I have had to witness her episodes of suffocation and inability to clear her airway without assistance. For four years my heart has hurt having to witness her countless struggles.
I had hoped the day would come where she would improve, I had hoped one day she would not have to struggle any more. I had hoped I would one day be able to turn away from her with no fear but I am afraid that day will never come.
During her surgery in April a malformation was found in her larynx that the doctors believe is causing some of her choking spells, sadly there is nothing that can be done to fix it. We are also going through the diagnosis process for another rare disease they believe Sophie has that would explain so many of her infections. I am frozen in time at this very moment as I try to come to terms with this new discovery.
In the last week Sophie has had more than a few severe choking spells where I thought the worst would happen. There is alot of mucous in her lungs that will not clear and has been coming up causing her to choke. They day we arrived here in FL while in her wheelchair sleeping peacefully she began to choke, she turned blue and was gasping for air as I tried to clear her airway. I had the ambubag ( resuscitation kit) out and ready to use when she cleared. The night before last she woke us up flailing her body around as she gasped for air, I cannot imagine what would have happened had she not been sleeping with us. This happened twice that night.
Her cough is more frequent and in her attempt to control the cough she hyper extends her neck backwards and in doing so blocks her airway, aspirates and begins to choke. It happens so fast and you must react so quickly its terrifying. I have always been afraid to leave her with anyone but now I am terrified, she cannot be left alone for even thirty seconds.
She is older and stronger than she has ever been and yet her health continues to decline and more complications are arising. I am grateful for the sinus surgery and that they were able to remove all the bacteria but the effects did not last long. She has a sinus infection once again, she has had it for over a month and at this point I’m not even bothering to medicate her.
We get used to living with the sinus infections and everything else and now the choking is worsening.
I cannot find the right words to describe what I am feeling right now. I just want the choking to stop, I just want the choking to go away.