He didn't have an esophagus for the first 16 months of his life and the one he has does not work very well, so it's no surprise that he does not instinctively swallow while sleeping. Think of it this way... Remember that feeling of bringing your new baby home and listening to the monitor for his breath, checking on him every time he makes a noise or goes a period of time without making any sounds in his sleep? Now imagine that feeling never goes away and almost 5 years later you're still listening to the monitor and running in to check every time something does not sound right. That's us... every single night.
It was morning when Ari choked. I had just gotten Liv out the door for school and sat down to have a cup of coffee when I heard it. Ari was coughing, gagging, sputtering. I jumped out of my chair and took the stairs 2 at a time, making it to his room in seconds. I reached for him and pulled him upright in one swift movement, but I was too late. I held his chest against mine and he cried, startled to be awoken so abruptly. I could feel his chest rattling against me. X-rays that afternoon confirmed the aspiration and by Monday we were visiting his pulmonologist, praying is had not turned into pneumonia. We started an aggressive cocktail of steroids and treatments. By Wednesday, his symptoms worsened and we increased the amount and duration of his medications. Larry and I had a big decision to make regarding the trip, which was already paid for. The hurricane had turned North and this was our last chance at a family vacation before Ari's next big surgery. We decided to go and I am so glad that we did. 24 hours in the humid, salt air and Ari was breathing better than we have seen him in years. The cough literally disappeared overnight. Here are a couple of pictures from our trip. I love the happy faces!
In addition the the stress and dread-filled anticipation that comes with another major surgery, we've had our share of drama lately. Nothing good comes out of drama... ever.
Last Sunday, Larry and I took the kids and two of Liv's friends to a festival at a local park. It was a perfect day and before we left to go home, Larry took the girls to look at the dogs up for adoption one last time while Ari and I went to the playground. I stood 2 feet from the entrance of the play structure, watching him closely as he climbed in. "I'll be right here!" I told him, as he disappeared into a tunnel, a huge smile on his face. After a few minutes passed and I didn't see him come back around, I started looking for him, playfully calling his name.
I didn't see him and panic started to rise throughout my body. Anyone who has lost a child in a store, even for a few seconds, knows this feeling. He had to be there, I saw him climb in just a few minutes earlier. My search became more frantic and my voice louder. I stepped back and checked out the other areas on the large playground, now yelling for him... my voice cracking with emotion.
At this point, I was completely engulfed in panic. I ran around to the other parents, telling them that my child was missing. I refused to leave the playground. If someone kidnapped him, he would escape and know to come back to this spot. Kidnapped... it was all I could think about. There were at least 1000 people there. Someone called the police. Describing Ari to the dispatcher on the phone... his blue eyes, his Superman Shirt, his scars... it drove home that fact that this was real. I was crawling out of my skin. "This can't be happening. Not Ari." I told myself... but it was. I felt like I was going to get sick... overcome with indescribable sorrow with each minute that passed.
Larry and the girls returned and joined the search. Back-up police officers were called in. I still could not leave the playground. After the worst 45 minutes of my entire life, I saw Larry running down the hill with Ari tightly gripped in his arms, crying and looking scared and confused. The relief that swept over me is beyond words. I grabbed him out of Larry's arms, held him tight and sobbed, unaware of anything except the feeling of my child in my arms.
The policeman was there, "Is he okay, Ma'am?" he asked. I did a quick look over and said yes. "Are you ok?" he asked, lightly touching my arm. I looked up at him and slowly shook my head. "No. I'm not." I answered. It was the truth.
It turns out Ari went down a tunnel slide on the other side of the play structure. He got disoriented and thought it was where I was standing and that I had left him. He said he yelled for me, but I didn't hear him, so he went up the hill and into the crowded festival to find Larry. Once in the festival, he got lost and eventually a woman found him crying. She went to the band and had them announce that they had a lost child. Larry heard it and ran to get him, along with another mother from the playground that left her own family to venture into the crowd to look for him. "I'm his father!" Larry yelled, and they were reunited. I am so grateful for the kindness of these good samaritans and wish I knew who they were so I could personally thank them again. I an also grateful that Ari knows his first and last name, how to spell both, and my cell number. This helped!
I have not gotten over the fact that he thought I would leave him or the feeling of him being missing. The truth is, Ari would not survive long under someone else's care and the reality of this is overwhelming. Other than Larry and I, my parents and Ari's nurse, there is no one else that understands the complexity of his medial needs in his day to day life.
But wait! There's more!
This past Sunday evening, after a fun day of apple picking with friends, Ari got food stuck in his esophagus... again. We went to ER after a couple hours of unsuccessful attempts to dislodge it. We would normally wait a little longer, but it was bed time and we couldn't put him down knowing it in stuck due to the risk of aspiration, which we've already covered in this post.
He was admitted to a room overnight and went into the OR at 8:30 Monday morning to remove the impaction. Despite being intubated on a ventilator for the procedure, we were home in time to pick up Liv in the carpool line. Ari thought the whole visit was great. He loves the hospital there a little too much. I, on the other hand, was not as thrilled. It was a precursor of what's to come next week.
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| He looks WAY too happy to be in the hospital! |
October 10 is the big day... next Wednesday. There has been so much anticipation in our house about it. I have no idea how we're going to manage a 5-10 day hospital stay and help Liv keep up with her homework and practice schedule. Thank God my parents are here and we have a strong support network of friends.
Ari has talked about this surgery for longer than 303 has been calling. He walks around with a blood pressure cuff on and explains to everyone he sees about his needles and noodles (IVs and medications). His bag has been packed for weeks and includes every DVD he owns- all out of their cases. He takes them out daily, lays them out in intricate patterns, explains to me which ones he's going to watch in the hospital on each day, and carefully places them back in his bag... over and over again. Even if we wanted to put it out of minds, we couldn't. I know this is his way of dealing with anxiety, but it's heartbreaking.
During Ari's hospital stay, I will try to update the blog frequently. Most updates will come through my Blogger iPhone app, so I apologize in advance for any spelling or grammatical error.
Today is his pre-op appointment where we'll cover all remaining details and pre-op instructions. Deep breath... Thank you all of of the love, support and prayers. As I've said before- it really does make a difference!
I'll leave you with a little inspirational singing that's bound to make you smile. You can't see Ari, but you can definitely hear him!!
Ari singing "This Little Light of Mine"
We'll be thinking of you all next week, sending many blessings. Lovelove, Katie
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