We have been really busy in the last few weeks, including moving to a bigger house. My mother in law left to her country for a month and she is the one who helps me with Sophie. Sophie was having a hard time adjusting to her not being here and then the chaos with the move really overwhelmed her. I had to unpack the house within the first two days of moving, I even stayed up from one day to another to try to speed up the process. Sophie refused to eat for about four days and she lost a lot of weight. But as soon as the house was unpacked and I reassured her this was “home” she started falling back into her routine and eating again. I am happy to report she has regained the weight and is back to eating every two hours.
This has been the best year Sophie has had since her birth, thanks to the combination of medication and respiratory treatments we have found a way to control the symptoms to her lung and sinus diseases. This has helped her maintain better health, she has a better appetite and she has even begun learning more and at an accelerated rate. I am so grateful to her doctors for never giving up on my girl.
Some days I don’t even think about Sophie’s lung disease but then we have a bad day, a really bad day that throws me back into that place of anger and fear.
Yesterday Sophie woke up with a nasty cough, its debilitating for her. But at the same time it is the best thing that could happen because without the cough helping her body get rid of the phlegm that phlegm would coat her lungs to prevent proper function causing lung collapse.
Her temperature was starting to rise and she was clingy and whiney which is not the norm for her. I started with breathing treatments and then her compression vest and we continuously repeated these throughout the day. She spent the day having episodes of expelling phlegm, it’s so hard to watch her go through that. She had a couple of bouts of drowsiness and turning blueish from lack of oxygen, each time it felt like my heart was going to stop. But I was able to get her breathing back to normal again.
I found myself crying a lot though out the day. When she starts having good days these bad days hurt so much harder because I am so hopeful for a miracle, that her body will become stronger.
Bedtime was the hardest. She was so exhausted but the cough would not let her rest, and as soon as I began to doze off she began to choke and by the time I jumped up and positioned her to clear her airway she had already aspirated on the phlegm. After cleaning her up and changing all the sheets all I could do was cradle her in my arms and rock her. And I cried, those heavy tears that have no end. Those tears that take your breath away, that come from the deepest depths of your soul where all the fear and pain hide. And after a long while when she finally settled down enough I laid her down next to me so I could hear her breathe and I prayed. I prayed over and over again, and I cried until I fell asleep.
Sometimes all you have to comfort yourself is a good cry. Oh what I wouldn’t give for my little girl to be healthy. If I could take this disease from her and live with it myself I would in a heartbeat.