One week goes so slow when you are waiting for things to improve. It feels like forever since I last posted to this blog-yet it was only seven days. Seven painfully long days. For seven days I have watched my daughter give it her all only to be knocked down again by her poor little ailing body. And I ask myself everyday-how much can this brave little girl take before it is enough? You would be amazed at what she can take. But last night it was more than she could take.
Apparently Kalyn has what is called ICU psychosis. She sundowns and becomes literally psychotic. She went 43 hours without sleep and then could not take anymore. She was angry and violent. She kept those sweet little hands balled into fists and shook one in my face when I asked her if she knew who I was. She would occasionally cry and say "I'm sick." She knew something wasn't right but couldn't control it. Yet she managed to stay awake through numerous medications. I woke up at 1:30 in the morning to the alarms from the ventilator and Kalyn trying to pull out her breathing tube. It was heartbreaking to watch. Finally she was calmed with Ativan and went to sleep for about 7 hours. When she awoke she was back to normal.
Today, they tried to extubate her unsuccessfully. She was working way too hard from the minute the tube came out. I think I knew this morning that it wasn't going to be successful. And I had accepted it. The ENTs came and reintubated her and let us know that they do not intubate more than 3 times and this was her third. The informed us that we will be hearing from them in the next few days to schedule Kalyn for a tracheostomy later this week. My heart sank. I didn't know that my heart was still able to hurt so much since it has been completely ripped out of my chest in the past few weeks.
I remember when Kalyn was born and they told us that she had Down Syndrome. I remember the geneticists telling us that we were the healthiest family as far as acceptance of this diagnosis. And all the time I was just happy that my child was alive. I didn't care that her life would be less than perfect because to me she was as perfect as perfect could be. I have never complained that she is slower to learn things, or that she is unable to walk, or that her speech is difficult for others to understand. I accept these things as part of her. And she accepts them because that is what we have taught her. However, as time goes on it becomes increasingly more difficult to teach her to accept things. I have taught her to accept being in the hospital and having needles poked in her. I have taught her to accept people staring at her in her wheelchair in public. I have taught her to accept that she needs the metal screws in her skull for the next 4-6 weeks to aid in the healing of her spine. I have told her that she should accept lying in the bed with a tube in her nose to help her breathe. And she has done all of this gracefully. Until yesterday, when she had reached her breaking point. And I feel as if she was entitled. She has laid in that PICU bed for 20 days. Who among you reading this would have made it that long? Not me. And how can I now ask this poor little sweet and innocent loving child to accept that they are now going to cut a hole in her neck and put in a tube that will be there for nearly 3 months only to then have another surgery to correct it? When she reached her breaking point I was right there with her. I don't know how much more fight I have in me. I have to find the strength to pull myself up and get her through this. I pray for that strength every day but it eludes me. I know that our future is out of my hands and in now is in God's hands. I just pray that he will give me the strength to continue fighting and the wisdom to guide Kalyn on her journey with the least amount of stress and confusion as possible. And I pray that he will make the universe give her a break when this is over----if anyone deserves a break it is her.
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