"We live in a rainbow of chaos." - Paul Cezanne

Thursday, September 26, 2013

The 1-3% Chance

"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' . . . You must do the thing you think you cannot do." - Eleanor Roosevelt

I have experienced a few traumatic events in my life (ones that I'm sure will pop up in future posts), but none quite like what we endured this past weekend. But first, some background...

My daughter is autistic. Beautifully crafted, our own little human Himitsu-Bako, she lives in a world we spend most of our time trying to reach and better understand. Hundreds of hours of therapy have revealed an affectionate, bright, and capable child, who struggles with language and emotions she is unable to express. As challenging as they are, we embrace her differences and focus on giving her the tools she'll need to navigate through this crazy world and helping others better understand her in the process.

Because of her autism, Maddie is susceptible to various health issues. One that we have been battling since she was 6 months old is her inability to breathe through her nose, especially at night. Her doctors told us it was allergies--use a humidifier, saline spray, Vicks' VaporRub. They even told us to elevate her mattress, which is hilarious when you think about trying to elevate a 6-month-old's mattress in a crib...which side goes up? How do you guarantee she stays in that spot and doesn't just roll down to the other side? Absurd. We even tried natural products like camphor menthol sprays and rubs, as well as various allergy medications her doctor prescribed. Nothing worked.

Fast forward 3 1/2 years, shortly after Maddie's 4th birthday. Fed up with our doctor's umpteenth attempt to make Maddie "better" by giving her yet another round of antibiotics, we decided it was time to ask for another opinion. Sent to ENT, we discovered that Maddie's adenoids and tonsils were enormous and needed to come out. Ta-dah! We had an answer!

(Now you may be wondering, 3 1/2 years and you never saw how big her tonsils were? We know she didn't have a way of telling you it hurt to swallow or something felt wrong, but you've never looked in her mouth once in all that time? Well, we did. But one common autistic ailment is a pronounced gag reflex. It's sensory overload. So brushing her teeth is a battle. Open up and say "ahh"? It's taken her 4 years to finally trust our family doctor enough to open up even halfway. So when the ENT doctor asked her to do the same, she clamped shut. Tight. Our child has some serious willpower. But this doctor was smart--he ordered an x-ray and voila! Gag reflex averted!)

Maddie had surgery 2 weeks ago to have both her adenoids and tonsils removed. Surgery went great, the staff and doctors were great with her, and there were virtually no speed bumps during her recovery. She was eating and drinking, sleeping well (no more snoring!), and seemed to be her normal self.

Fast forward to Day 11 (post-surgery)... looking back it's easier to pick up on little signs that something was wrong. Her snoring was back and increasing. She wouldn't take fluids, and picked at everything I gave her to eat. She was in a generally good mood but would burst into tears at any given moment. We thought she might be draining (causing the snoring), which meant she wasn't getting a good solid night's sleep (causing the breakdowns).

We were hanging out in the living room and she was playing in her play area watching a video on my phone. I heard her cry out in frustration, and thought YouTube was acting up again. But when she came around the corner she was frantically rubbing at her face and blood was pouring our of her nose. Blood. Now, I can handle blood. Vomit--that's a whole different story. But blood is a piece of cake. Unless it's coming out of someone you love. Then things get a little hairy. But Maddie is highly sensitive to our emotions, so I tried to remain as calm as I could while I cleaned her up. Surprisingly, the bleeding stopped almost immediately. Remembering what the doctor told us about possible bleeding during the healing process, I fed her a couple of popsicles to numb the area and mentioned the episode to my husband when he got home from work.

A little while later I was changing her diaper when what I saw made my heart drop--black stool. She'd ingested blood, but how much? We immediately got on the phone with the on-call doctor, who said to keep a close eye on her and if there were anymore bleeding episodes to come into the ER immediately. So we put her to bed and kissed her goodnight, mentally preparing for the stressful night that was sure to come. I decided to check on her every hour before we went to bed, and I thank the lucky stars I did because when I went to check on her after that first hour, she was struggling to breath and sounded like she was choking. I immediately woke her up, called Conor upstairs and we discovered that her mouth was full of blood.

Amazing how quickly you go from relaxing dinner and a favorite TV show to full on parental "don't panic" emergency mode. While I gathered everything we could possibly need for a night in the ER, Conor was getting Maddie dressed and ready to go. Downstairs, I had the last of our things together when I heard Maddie vomit and Conor screaming the words you never want to hear--"Call 911!" Dialing, I raced upstairs to find a scene from a horror movie. Conor and Maddie standing in a pool of blood in the hallway, and Maddie screaming in panic. My worst nightmare.

I could barely speak as I called for an ambulance. The EMTs were trying to get vitals, but they were having a hard time finding her blood pressure. When she vomited blood a second time, they gave up trying and rushed her to the hospital. The rest is a blur of constantly making sure that the doctors and nurses were aware of Maddie's autism as they poked her with needles and pinned her down so they could get vitals and an IV started. When all you want to do is hold and comfort your child, the last thing you want to do is immobilize them so they can be "tortured" (in her eyes). I kept reminding myself that what they were doing was for her own good, but at one point I had to yell for everyone to stop (Maddie was thrashing and fighting the doctor as he pinned her down and tried to look down her throat) because they were never going to get her to cooperate if she wasn't calm. By that time she had vomited blood three more times and we were done with tests and answering the same questions over and over. Turns out we didn't have to wait much longer--the on-call ENT doctor showed up and asked, "How much blood did she throw up?" I said, "It looks like someone was murdered in my house." So he quickly replied, "Then we're taking her into surgery now."

Whew. Instant relief. No more fighting the doctors. My panic level receded to a tolerable level until they start going over all the risks of surgery under the less than ideal circumstances. In response, Conor and I took turns cuddling Maddie in the hospital bed as we waited for her to be wheeled into surgery and I told him, "Tell her that you love her. Tell her everything you want to tell her. You don't want to have any regrets about the last thing you said to her." Not something any parent wants to think about when their child is only 4 years old. But we did. And we had a quiet, touching moment where it was just the three of us (much like it has always been), relying on each other and reminding me just how thankful I am for my little family.

It was close to one in the morning by the time Maddie was out of surgery. Turns out she had a blood clot in her throat from the original surgery, which caused the massive hemorrhaging. The odds were very low that a child her age would ever go through such a thing. The doctor called it bad luck. Looking back, I'm just glad with all that bad luck, everything turned out alright. We dozed in recliners next to Maddie's hospital bed for the rest of the night, but I had a hard time sleeping. So much had happened in such a short period of time, I just needed time to process my thoughts and feelings. How do you prepare for the possibility that your child might not live? How do I get all the horrifying images from that night out of my head? How does something like this happen to such a sweet little girl, who already has the deck stacked against her?

They say now about every 1 in 50 children are diagnosed as somewhere on the spectrum. 1/50... hmm, that's a 2% chance. 1-3% chance of having a great adenotonsillectomy, smooth recovery, and then violently vomiting up blood when you think you're in the clear that requires another harrowing emergency surgery and a hospital stay. Well, at least she's consistent. But seriously, what are the odds?

After sleeping through most of the night, Maddie woke up to her favorite cartoon on TV (Umizoomi), got to eat more popsicles, and even requested a doughnut when they asked her if she wanted something for breakfast. Amazing. Twelve hours before we were preparing for the worst, and there we were laughing with relief at her request. So normal. Decompression...panic level gone.

As we drove home after Maddie was discharged later that afternoon, I dreaded returning to our house, knowing the scene that was waiting for us when we got there. But we had a plan and we'd deal with it. As a couple, Conor and I are always at our best when it concerns Maddie. We lean on each other, and even though we have our moments, when it comes to our child we are a united front. No matter how horrible or scary a situation is, we will always be strong for Maddie. So bad luck be damned.

Maddie's recovery has been smooth sailing again. And the doctors reassured us that the chances of us dealing with something like that again would be "astronomical." I'm not gonna lie--we were in there the first couple of nights checking for blood in her mouth and feeling the paranoia take over. But this time the doctors were spot on. And Maddie couldn't be doing any better.