I'll be catching you up over the next few weeks, but for now I have something on my mind… something that I feel a powerful need to share…
I'm scared.
You all tell us how strong we are, but you need to know that this fear exists. Every night, we put Ari to bed and listen to him choke and cough as he falls into a deep sleep. I'm so thankful for his adjustable bed. It helps, but he still chokes and sometimes even vomits in his sleep. I listen to him and fear that he'll aspirate. Every. Single. Night. We have a baby monitor and hear him gurgling and coughing all night long. Sometimes he settles into a position where the saliva drains. One would think I find comfort in these quiet moments, but it's quite the opposite. These are the times I run into his room to make sure he's still breathing… actually rousing him from his deep sleep to confirm, without a doubt, that my child is ok.
I'm scared he's going to die.
Do you know how hard that was to write? I think about it… way too much.
Reality slapped me in the face when I was filling out paperwork for his secondary insurance. His pediatrician (whom I adore) wrote the words Larry and I thought, but rarely spoke, in his letter. "Ari is the most medically/surgically complicated patient a doctor has. His complexity requires fluctuating amounts of attention. Many times he has life threatening episodes which if not properly attended, will lead to death."
I read this over and over again. Of course Larry and I knew this… why was it so hard to read from someone else? Want to know the real kicker? We got denied for his secondary insurance. They said his condition does not require frequent medical interactions and he did not have any upcoming surgeries that would require additional medical care. REALLY!?! I guess catheterization through his belly button every 2-3 hours and spending an hour plus on the toilet doing a bowel flush every day doesn't count. Oh, and despite these 'frequent medical interactions', he has no urine or bowel continence. Let's not overlook the fact that he has ZERO peristalsis. We had a test a few weeks ago and this was confirmed. Other than a strong swallow, Ari has no esophageal motility to push food into his stomach. No wonder food gets stuck so often! According to the doctor that did the test, "This is as good as it's going to get until medicine advances." So now, on November 15th, Ari is having a G-tube inserted into his stomach again. So in addition to the daily medical care mentioned above, add frequent g-tube feeds. None of this was good enough to get him approved. We're in the appeal process right now. Who knows what will happen, but I can tell you the the financial impact of losing this insurance will be devastating to our family.
I'm scared we'll go into financial ruins paying for medical bills despite having good primary insurance (for now).
Here's one I'm pretty sure you haven't thought about… I'm scared to be more than a few miles away from Ari at any given time, especially when he's in school.
I can't wait to tell you all about the wonder experience Ari is having is kindergarten. His teacher, Lisa Boone, is a true blessing to our family. We really couldn't do it without her. Ari's having a great year, but there's always a lot of questions surrounding his care. What if they need me? What if his button (soon to be button and tube) gets pulled out? What if he chokes? What if he experiences gastric dumbing and can't stop pooping? I need to be close to him at all times and it's mentally and physically trapped me. The school has done a great job (props to Sharon Elementary!) of managing his care, but I'm the mama and when he needs me, I want to be there.
The crazy thing is, none of these fears will go away any time soon. It's our life… we're used to it. Sometimes I think people view Ari's care as difficult, but it's not at all. He's such a joy in every aspect imaginable. Fear is the true burden… the words not spoken (until now), the weight on our shoulders. As we gear up for his surgery in less than a week, we have to face a new set of fears… anesthesia, surgery, infection, healing, his emotional well being, LIV'S well being, pain… the list goes on.
Ari spiked a fever last night and started hallucinating. Quite frankly, it creeped us out… enough that Larry slept with Ari all night. Is it a sign? The power of the unknown is almighty… At this point all we can do is pray for clarity and hope we make the right decisions.
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| Happy in the The Digs at school |
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| Ready to go before his last procedure |
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| Butchie from Teen Beach Movie for Halloween |
