Yesterday was Olivia's 3 month post op with Dr. Rahbar. You can tell she is tired of the doctors office. She was screaming the whole way into the exam room. Then she needs to be seen by the physician's assistant, before being seen by the doctor. (he's kind of a big deal!). So that's two ear checks, two nose checks, two lung checks. The poor kid. Not only that but she has a cold, so she was already not comfortable. In even more insult to injury, Dr. Rahbar has to put a scope in her nose every time we see him so he can check her airway and larynx. Unfortunately yesterday he said the cold was so bad he couldn't even see her larynx. Sigh. Dr. Rahbar always walks into the room with a trail of people following him. Hanging on his every word, jotting notes. Its like he's a celebrity. Yet, he ALWAYS shakes my hand, tell me how nice it is to see me again, and talks to Olivia. Olivia actually threw up on him yesterday, and he cleaned her up himself. I was impressed!
At any rate, Olivia still needs her liquids thickened. We are at a 50% reduction of thickener and that's where we will remain for the time being. Dropping to 40% caused Olivia to aspirate again. Olivia now needs to be evaluated by the feeding team at Children's. They essentially watch how Olivia eats and drinks and figure out what causes her to cough, choke and aspirate. Once this is discovered, they can figure out how to strengthen her muscles to allow her more coordinated swallowing. I guess it all makes sense. She has never been able to swallow normally, so of course it will take some practice. In January Olivia will have her fourth and hopefully last swallow study and if she passes, we are past this! If she fails, well, we will figure it out then. Dr. Rahbar said "I have no doubt she will eventually be fine". And, I have no doubt he knows what he is talking about.
So, why am I taking this so hard? Well, I guess I just wanted it to be over. For the cleft repair to have just fixed her. I remember the first pulmonologist we saw, before I fired her, saying "Oh, if she is aspirating we can just fix it with thickened formula, or maybe just a couple stitches in her throat." Well, Dr. she was aspirating, despite your thought that she wasn't, she couldn't just use thickened formula because she initially failed both thick and thin liquids. And no, her surgery was far more than just a couple of stitches. Talk about false hope!
One year ago yesterday, Olivia's cleft was discovered. Her first of four different trips to the operating room in 17 months. Not once did it ever get easier. I never had any idea that this would take so long to correct. It breaks my heart every time Olivia wants to drink a juice box, or eat an apple. Such a simple task for most, but her little throat just can't do it yet.
On my drive home, two of my closest friends were texting me "how did it "go?". Anxious to hear about Olivia's progress. Funny who truly cares. I've explained to family members a million times what is wrong with Olivia. Either they aren't listening or just don't comprehend. Olivia does not have a "normal" condition. She has a RARE congenital condition. I was asked "Why does she have to keep going to Children's?" Well, first of all, because she had MAJOR surgery on her AIRWAY and needs to be followed by the surgeon until she is 100%. The lack of compassion I receive from those who are supposed to give it the most astounds me. I've said it before, and I will say it again, I have the most amazing people in my life, that I just can't thank enough for being there for me the past 18 months. There have been many days of sadness and tears and I always knew I had people to talk to, vent to, cry to, or even bring me Chinese food in the hospital and say they were Olivia's aunt because visiting hours were over (Lauren!).
Having Olivia as my daughter is a gift. There is a special sparkle in her eyes. It is also emotionally exhausting. I just want this chapter of our lives over. Eventually it will be, I know, and I 'm so grateful. I just hope it hurries up a little.
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