Not Good, Not Bad
That pretty much sums up the day here in our little piece of the PICU. The plan for the day was strength training. It never happened. They feared that Ash was just not recovered enough from the trauma of yesterday to really give it a go. Her respiration rate on the vent was set on 10 and she was over breathing it by 50 giving her a total of 60 respirations per minute. We checked her blood gases and they were perfect, but the doctor decided to give her 24 hours to rest and recover before really getting to work. So like I said it wasn't bad, but it wasn't good. They or I in no way want Ash to fail the sprint trials.
I have an issue with that word. The word fail. I am far too competitive a person to like a word that means you weren't good enough. I remember the first time her doctor in the NICU labeled her as "failure to thrive". I was upset! I know its just a term used to describe not having the ability to eat and grow, but it didn't set well with me. To be honest it really hurt my feelings that they thought she wasn't "cutting it". I never really forgave him for calling her that. Every day on rounds I would tease him and remind him that it wasn't an option to say that Ash was failing. Yesterday the knowledge of her failure stung my heart again. Couldn't we say it a little nicer? I want to think of it as a practice run. Acknowledging that she failed to breathe on her own is just too much for me right now. I don't really want to think of it anymore.
Ash spent the afternoon sleeping. After staying awake far more than she slept last night I knew she would be exhausted. She is really agitated today. No blankets! No talking! No touching! No anything! She has tremors in her hands and feet from withdrawal. They are giving her just enough medication to make the vent tolerable, but she is not sedated and she is not happy. They began a small dose of ativan and methadone to help her as she withdraws, but she is still having to learn to cope without the help of the sedation medications.
Our hearts desire is for Ashley Kate to become strong again. At this time they have identified no source of infection. Our best guess is aspiration from all of the vomiting she had done. Since our admission she has not vomited one time. Thats 12 days in a row without throwing up. The cellept was stopped almost immediately upon arrival. We are hoping that was the cause of her trouble. So if I really stop and think about it then perhaps this was all about finding the source of the vomiting? I'm not sure, but if we have truly identified the problem and it ceases to occur then maybe this was all worth it and maybe she won't have to endure the daily vomiting episodes. Just maybe?
I know in my heart that her spirit and the twinkle in her eye will return once she is off the vent and breathing comfortably. I just know it. Right now she is being so good and so tough as she waits on her lungs to heal and grow strong again. I am so proud of her. She still amazes me. I hope this will be her week. The week she gets strong. The week she learns to breathe again. The week she returns with every bit of that ornery streak she is so famous for. I miss her personality!
Thanks for checking on her today and thanks for your continued prayers. Have a good evening. Trish