Today we had our follow up visit with Dr. Rahbar (have I mentioned I love him?). Seeing there was an emergency at the hospital his appointments were pushed back over an hour. In the meantime, in the waiting room I met another mother whose son had the same condition as Olivia. We chatted for about 30 minutes and our stories were almost absolutely identical. Except, her son wasn't diagnosed til close to 18 months of age, AND he flat lined on the operating table....again, I'm truly lucky I have Olivia. As scary as that story was, her son now 7 months post op from the same procedure as Olivia finally passed his swallow study! Such a great ending! I really just wanted to give this woman a big hug and become best friends, because I know exactly what she has been through. It was so comforting to finally meet someone who knew what I was talking about, and who understood what it was like to be told countless times that there is nothing wrong with your child. Yet, I'm a firm believer, mothers intuition is ALWAYS right. We both agree that Dr. Rahbar has truly changed our children's lives.
So enough about me, Olivia is doing fantastic! She had to have a scope put in her nose to check the stitches in her throat. She didn't make a sound. Not a cry, not a grimace, NOTHING. Olivia's motto is pretty much "no big deal". I might be strong, but I really think Olivia has me beat. The stitches look great, and the doctor said that everything looks PERFECT. Yup, he said PERFECT. I asked the doctor for a quick picture, because he changed my daughters life and he was so kind to oblige....I mean really, I'm sure he has TONS of other patients waiting, but he didn't seem to mind one bit!
Now, we have a new plan. Starting in July we will start thinning out her drinks. He said to reduce the thickness by 10% for 10 day intervals and see how she does. If she doesn't do well, stop and wait longer. We don't have to go back until late September! He also said we don't have to see her Pulmonologist anymore at this point, and that he can take care of her ear tubes as well. YAY! 3 doctors appointments knocked right off my summer schedule! My new goal is to convince her GI doctor that the feeding tube really is unnecessary at this point. Their concern was she would not be able to eat once the surgery was done. However, she had no problems tolerating food as soon as she woke up, so there is really no reason for the tube. Worst case scenario, she just has to keep drinking thick liquids.
It seems this will be a lengthy process, about 12-16 weeks before he will even do a repeat swallow study to confirm she no longer aspirates, but I'm still elated. The alternative would have been waiting and waiting to see if the issue "corrected itself" (which I knew in my heart was never going to happen) and have her even older and able to remember going through all of this.
For the first time in 15 months, I finally feel relieved. The last fifteen months consisted of meeting at least 10 different doctors, seeing my pediatrician at least once a week, nebulizer treatments, steroids, chest x-rays, reflux medications, endoscopies, broncoscopies, barium swallows, modified barium swallows, ear tubes, hearing tests (failed!) naso-gastric tubes, gastronomy tubes, thickened formulas, dairy free diets, visiting nurses, over $150,000 in medical bills (THANK GOD FOR INSURANCE!) and a whole lot of desperation! My months of research, and tears have paid off. We MADE IT! I truly feel like this is the beginning of the end of this horrible memory, hopefully I'm not wrong.
I could not have gotten through any of this without my mother in law, father in law, sister in law and friends. Helping out with the older kids, trying to keep their lives as normal as possible so that they don't resent Olivia for all the attention she needs. My mother in law came to surgeries, and tests with me, listened to me cry, sat by while I had a breakdown over the Cystic Fibrosis test and took it out on a random stranger on an elevator and even asked a Priest in the hallway to bless Olivia. (Yup, that's her style!) And my friends who have listened to more than their fair share of my medical gibberish and never, ever acted annoyed by all of it. I have received countless texts from them asking for Olivia updates. And yes, I realize I say this in just about every blog, but it AMAZES me how much people truly care. Olivia was a gift. She has taught me so much, and made me so grateful for what I do have in my life. She has taught me who the people who really matter are. She has made me a better person. Cliche, yes, but so true.
There are those who have been supportive every step of the way. There are those who should have been and weren't, to the ones that were, Olivia and I are both eternally grateful.
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