The day after Thanksgiving, my parents left for a 17 day Mediterranean cruise. They both had their own health challenges over the past few months. My father had to have his newly replaced hip reconstructed after shattering his femur, which caused the hip to repeatedly pop out. My mother had a long overdue surgery on 3 damaged vertebrae in her neck. They deserved this special vacation, but as the saying goes, timing is everything...
The day they left, Liv fell tumbling in the yard and broke her back. Yep...you read that one right. Only, I didn't know she was seriously hurt. I sent her to cheer practice, tumbling and then fly class before she came to me with the admission that she was still in pain. Tough girl! I guess it runs in the family. Five days after she fell, I took her to the doctor to find out that she had a compression fracture between L5 and S1. We had to pull her from cheer for the whole season. She couldn't carry over 5 pounds, bend, twist, jump, run, pull, etc... for 10 weeks. Do you remember my last post? The one that mentioned her dedication to her sport and how it is a critical escape for her? Yeah... this was a "less than ideal" situation to say the least. She actually handled it better than I did, mostly due to how her coach/gym owner handled her injury. He was so genuine when he spoke to her, encouraging her to heal and to listen to her doctors and reassuring her that she'll return next season even stronger. He told her that she's still part of the team and could now help coach... even making the "official" announcement to her teammates of her new role. His impact in her personal acceptance of her injury and healing was HUGE, and I was once again grateful for our ATA Family. What an amazing organization.
Less than a week after Liv's injury, both kids woke up vomiting... a first for Ari. I thought it was a stomach bug, and in Liv's case, it was. She's stoic and prefers to be left alone when she's sick. At one point, I checked on her to find out she had been sleeping on her bedroom floor. She actually asked me to leave her there and told me she had it all under control.
Ari was another story... something was very wrong. Was is a bug? Was food stuck? Was there another underlying illness? Night after night, he gagged, choked and gurgled. We took turns sitting in a chair with him to keep him upright. We didn't sleep at all for fear he would aspirate. I didn't know who to call. GI seemed logical, but when I called the practice in the middle of the night, the doctor on call literally told me there was nothing he could do for me. I had to either take him to the hospital or deal with it. Really?!? If I could deal with it, I wouldn't be calling. I spoke to our pediatrician, too. He was helpful, but didn't know what to do either. We decided to take him to the hospital... Ari was getting weaker by the hour.
The hospital thought it was a stomach bug and admitted him, treating him for nausea, dehydration and a UTI. He went a week without eating, looking sallow and sickly. I so wished my parents were back. It seemed like they were gone forever. On a whim, I sent my mom a text telling her that I missed her. It was upbeat and cheery. Just in case she actually got it, I didn't want her to worry. When Ari's condition didn't improve, the attending doctor (GI, but not his primary one) ordered an esophagram.
Ari in the hospital looking weak
It was Saturday... I remember it so well. Down to fluoroscopy 3 we went. He hates that room, but didn't cry... he was too weak. The image on the screen was shocking. There were bulges and bends I had never seen before in his esophagus. The barium barely moved. They asked us to come back in 45 minutes to take additional pictures. I wheeled Ari around the empty radiology unit, looking at Christmas decorations and making the time in the deserted halls feel like an adventure for him. Inside I was screaming, crying, sad, angry... scared. On the outside, I was going on a treasure hunt, pushing my child in a wheelchair. The second set of films didn't look any better and Ari was scheduled for an emergency procedure that night.
I always get nervous when a doctor not familiar with Ari's anatomy has to operate on him. The doctor admitted he was apprehensive to work on him, too. I asked him to call Ari's primary surgeon, Dr. Bleacher, and see if he was in the hospital. He created Ari's esophagus and needed to know what what was going on. I am so grateful he was there... I later found out that he scrubbed in for the entire 2.5 hour.
I'm thankful my cousin Rebecca and her husband were in town. We could not have kept Liv as distracted without them, especially since she couldn't be outside running around with her friends. Larry had already gone home to help with Liv when the nurses came to tell me that the OR was ready for Ari. I felt so bad that he wasn't there. It's happened to both of us so many times with procedures in the past. It's heartbreaking as a parent... Could you imagine not being there when your child is put under anesthesia with a breathing tube? It's a guilt that never really goes away, but when it happens enough, we become somewhat numb to it.
After Ari was taken through the doors into the OR, I walked alone to his room- refusing the nurse escort back. I knew my way around the surgery halls and was not in the mood for small talk. My heart was literally breaking. I was praying... crying... face in my hands, sitting all alone in his room. I was startled when a text message came through. It was my mom and it said "Miss you so much too!" How could she text me? They were in the middle of the Atlantic on their 7 day return to the US. I immediately text back "Mom! Are you there?!" My phone rang... it was her. Emotion rushed over my entire body. She randomly picked up a weak cell signal and sensed something was wrong. I didn't want to tell her, but she insisted. It was so comforting to talk to her. I can't imagine what that call cost, but to me it was priceless.
Feeling a little more calm, I waited and waited, receiving a call every hour or so from the OR. I know I've said it before, but I don't like these calls. It does't give me peace of mind, it gives me a visual. "The breathing tube is in and the doctor is starting the procedure.", "They are about to finish and close him up.", "The doctor is still working."... Ugh.
A few hours later, Dr. Bleacher walked in. He sat down to talk to me. I could tell by the look on his face that the news was not good. Ari's esophagus looked awful. It was packed bottom to top with a week's worth of food. Nothing could pass through it. It was thickened, covered in yeast, stretched in new places, bent, and narrowed. The way it looked, it was not viable in his body. For 2.5 hours, the GI doctor picked out food, piece by piece. Even then, he couldn't get it all. This was devastating news for us. If transitioning to purees and soft foods and treating the infection didn't work, we will have to come up with another plan. Words he never wanted to say and I never wanted to hear were spoken. We may have to remove the esophagus, go back to a spit fistula and g-tube, and start over. This was not going to happen without a fight from all of us. Once again, I felt heartbreak for my son who was suffering, but not once did he complain, and gratitude for Dr. Bleacher for his genuine dedication to my family. As he was leaving the room, I said "Thank you so much for scrubbing in tonight- it means so much to us." He stopped in the doorway, slowly turned around and said, "Well, Ari means a lot to me." I believed him.
pre-procedure images
Once discharged, our goal was to get through the holidays and schedule an esophagram and esophageal scope with Dr. Blecher and Dr. Blumenthal (his primary GI) in January. We lived each day with a fear of choking. He still was having difficulty at night and his weight was down. I remembered my friend Brandi telling me that her brother Rick Graham owned the local America's Mattress stores, so I reached out to her to see if he'd be willing to assist us with the purchase of an adjustable bed. I tried to get insurance to cover one for years, but they denied our request, even with letters from multiple doctors and copies of hospital bills that could have been avoided if Ari had not aspirated in his sleep. These beds were expensive and any discount would go a long way. Before that day was over, Brandi had reached out to her brother and said he'd be happy to help. I know I looked awful going in there. By that point, I had gone over a week without a good night's sleep and was emotionally as well as physically exhausted. Imagine my surprise when Rick told me about a recent sermon he heard at his church (North Point) about giving from one's own means and he was moved to know that what he had the ability to provide (the bed) could have such a positive impact on a child's life. Rick, in an amazing act of kindness and generosity, not only gave us the bed, mattress and waterproof mattress pad, he made arrangements for it to be delivered that same day so Ari did have have to sleep another night without being at an incline and we, as parents, could rest easier. God Bless Rick and America's Mattress. He changed our life. Who would have known that a bed could make such a difference? For the first time in Ari's entire life, he didn't choke, cough and gag at night. The first few nights, Larry and I would jump out of bed to make sure he was alive, only to find him sleeping peacefully. We have either slept with Ari or with a monitor, getting up multiple times a night, since he came home from the NICU. The few nights he has had difficulties since getting the bed, there was room for us to sleep with him... comfortably.
Ari loves his new bed!
So... January came around and it was time for Ari to have the follow up esophagram and scope. We were so nervous for him. Not Ari... look at that brave face!
The scope was quicker than we expected. Both doctors came in to talk to us, shaking their heads in disbelief. Ari's esophagus not only looked better, it actually looked good. It was back to normal (well, normal for him) and there was no sign of the dead-looking organ from December. It was nothing short of miraculous. Believe it or not, we credit it all to the bed. Ari does not instinctively swallow in his sleep. The incline has allowed his saliva to drain and puts reflux at bay. Rick's generosity literally changed Ari's life. He's eating almost everything now and... drumroll please... has started pre-school!! I'm going to enjoy this period of time while it lasts. Though we've had some minor issues, his Mitrofanoff has been easy to cath, he's eating, drinking, socializing, going to school and overall, just a really great kid who appreciates all of the little things in life like circle time and playing outside.
Liv was given the clearance to return to cheer and didn't lose any of her tumbling skills. She's working hard to regain her strength and flexibility and hopes to be back in peak condition for try-outs in May.
I PROMISE not to let so much time pass between blog posts. In the meantime, if you're on Facebook, please follow Roar Little Lion- Ari Shumbres Update. It's easier to post quick updates there from my cell phone.
Check out the decorations from our friends The Duncans and The McWhorters for
Ari's 5th birthday on January 25th! Friend LOVE!!!
