Liz and I stood at our kitchen counter late into Wednesday night before the surgery. We talked about Christian and the health issues we have faced with him up to this day…the 3 unexplained episodes at 3, 6, and 18 months old, the constant worry about him drinking pool or bath water or a random water bottle he got his hands on, the middle of the night wheezing and hospital room trips, the bout with pneumonia. All of these things landed in the “pro” surgery column. In the “con” column was the fact that this isn’t a life and death condition requiring immediate surgery…it’s not a tumor or a hole in his heart or something else we could have quickly wrapped our heads around. We could do this later in his life or never. Yes, long term lung damage was possible…but not a foregone conclusion. Yes, we would have to thicken his liquids forever but we could get through that. If you know us it’s no surprise to learn that all of the “con” arguments were mine while all of the pro arguments were Liz’s. It’s not that Liz hadn’t carefully considered all of these things I was bringing up, because she had. She just just does a much better job of reconciling her decision in her head and not dwelling on it. But she is persuasive in her points during our kitchen talk and I feel steeled towards this decision. Yes, we are bettering his quality of life. He should be able to live his best life and we are going to give him that. That is a parent’s job after all right?
There wasn’t much sleep on Wednesday into Thursday morning at 4:30 when our alarm went off. Christian laid in between us in our bed and I woke up a few times to reach my hand towards him only to find Liz’s hand already resting on his chest. I drank him in a few times during the night, he’s always so sweaty when he sleeps and his sweat smells almost sweet. Will I always remember this smell? Gabe came in at some point during the night and when it’s time to lift Christian out of bed and put him in the car I find Christian’s hand touching Gabe’s foot. Gabe, the lightest sleeper in our house will wake when I lift Christian.
We drive to the hospital in the dark but there are so many cars already on the road…the early LA commuters trying to beat traffic. This is how early Liz drives to work on most days when I’m not traveling. Does it feel awkward to her to be with us in the car headed to a hospital…or does the dark commute feel almost normal? I don’t ask her, instead I just mumble something about her being used to this. Christian is sleepy but he calls out “big trucks!” and “cars!” to us as we pass them on our 15 minute drive to Ronald Reagan UCLA Children’s Hospital. It’s not lost on me that many people have to drive hours for good healthcare and some of the best hospitals in the country are 15-30 minutes from us.
We valet park our car and check in to “Maddie’s Room” where we get one of those light up vibrating disks to wait for our next step. Christian seems apprehensive and wants to stay close to us. He lifts his new stuffed doggie that our neighbor gave us and asks to get into Liz’s lap. He lays on her and lets her hold him for longer than normal. We are called back for registration and then upstairs where we wait in line with our colored folder. This is when Liz starts to lose it under the reality of it all. We have talked about how we have to be strong for him so I give her a sympathetic look but also tell her she needs to get herself together. We are asked his date of birth 10 maybe 15 times from 5:30am-7:30am to the point that I want to pin it to myself. Each time I say it or hear Liz say 1-9-17 I have a strange recall…to think I brought this boy into the world 21 months ago and I’m back at a hospital to have him wheeled away from me today.
Eventually we are placed in a room to wait for surgery. They wheel the bed out and swap it for a crib which I tell them he won’t even touch at home anymore. I wish them luck and they reiterate that it’s hospital policy for kids under 2. A total of 3 nurses work with us over the next 75 mins…we’ll name them the “happy nurse” the “information nurse” and the “OR nurse”. The happy nurse brings us 2 balls for him and he barely sits still for the next hour. He’s kicking the balls all over admissions and yelling things like “that’s a big one!” Or “oh, almost” when he doesn’t kick it as far as he’d hoped. We get comments about what a great soccer player he will be. I casually accept the compliments and secretly fist pump in my head…I can’t help but think that my dad would have loved to see him kicking the ball like this. I make the OR nurse meet my gaze and will her to look after him, as if that will matter. She seems to understand though because she says “I will take good care of him.” I believe her, maybe because I’m desperate to, but I believe it.
The anesthesiologist comes to visit us…Dr. Patel (a female doctor) who we learn is the head of pediatric anesthesiology. His ENT who will be performing the surgery, also a woman, comes to see us. She takes one look at Liz and me and makes some comment that is lost on me at the moment. She greets Christian and says “oh, we are matching today huh?” I look down at my shirt and remember that I made Liz wear her California bear t-shirt too. I go into some half assed explanation about how Christian is actually “Christian Bear” and that we wore the shirts for him. I wasn’t concerned if she got it or not. All I needed from her was to be focused and confident. Liz and I had a laugh about it later…”whoa lady friends…matching outfits today eh?!”
I ask the anesthesiologist if I can come back into the room with him and she redirects me and tells me that she will see how he is doing after they give him something to take the edge off. She equates it to having a few cocktails and says he will not remember going back into surgery. So basically they are ruffying my kid. I give it him the meds and he sits on my lap and continues to play on the iPad they gave him. I know it has taken effect when his movements start to slow and he moves his finger like it’s stuck in mud across the screen. At this point I’m crying onto the top of his head because I know they will take him soon. All the “why the F am I doing this?” panic floods back in.
The pulmonologist comes to see us at 7:45 and apologizes for being late…which was news to us. She seems flustered but that is a bit of her normal. She tells us that if the ENT doctor finds a significant cleft then she will put her lung tests on hold to allow the time she needed to repair it. Then she squeezes my hand hard and says it will be ok. She has seen Christian regularly since February and is the doctor who recommended the swallow test. She also knows it took time and convincing to get Liz and I to a point of agreement with the surgery.
During this time we are in the pre-op room Liz is asked to sign a million forms about side effects and liability. I’m so grateful she was tasked with all of that. The anesthesiologists come back and tell us that if the child is upset they recommend a parent come with them to ease the transition. But in our case they can tell Liz and I are both upset and that Christian is, well, high as a kite. The recommend we do not go in and Liz concedes. For a split second I think to fight it but I don’t. I just regret not telling him I love him and making him look me in the eyes before he took the happy drugs.
We watch him being wheeled away in his crib holding the iPad and I can tell we are both on the verge of breakdown. Someone who I still don’t recall offers to show us out. We have to go back down one floor to Maddie’s Room. The woman who took our yellow folder on the way in asks if we are ok. I don’t make eye contact and nod my head yes. We walk to the elevators and push the button without looking at each other. It feels like we run into the elevator and as it closes we hug each other and cry very ugly “holy F-ING shit what have we just done?” tears. We check in and get a 6 or 7 digit number that is color coded through the process…pre-op (green), procedure start (red), procedure stop, recovery, etc…I can’t bear the thought of watching these color coded spreadsheets inside of a room so we go outside onto the patio. It’s a strange LA day, it’s chilly and the sun isn’t out yet.
Liz and I text our family and take turns crying. I say a Hail Mary and ask for God to guide the surgeons hands and fix him. We wait for what feels like an eternity and then we go to the cafeteria. I tell Liz that we may not eat much for the rest of the day or the next day if we are in the PICU with Christian so we should eat while we can. We both have oatmeal and wait. We are about to head back over to the waiting room when the woman from the reception desk comes to find us. He’s done and they need us to go up and ask what room he’s in. It had only been 60 minutes…the surgery was slated for 120. My mind goes to ‘something bad has happened’ and Liz just thinks they didn’t find an issue or that it was minor.
We find him in a nurses’ arms when we get there, he’s already awake but hasn’t come out of the anesthesia fully. He’s limp and his head is looking up at the sky with his neck stretched out in an unnatural looking position. I take him in my arms and tell him mommy is here with him again. His breath smells strong and caustic/chemical like. Is that from the laughing gas? Breathing tube? He eagerly goes to Liz and says “I don’t want it” to me. I’m ok with that, I want him to get through this with whatever makes him the most content. I talk with the doctors and they tell me they didn’t find a cleft, the cleft they had been confident existed since March. They found perfect structure of his esophagus, larynx, cartilage, vocal cords, etc…his lungs look great, not even indicative of a kid with asthma. What a high and low of emotions at once. I’m shocked and frankly they look surprised.
We steeled ourselves towards surgery after months of procrastinating. We were ready to give him the life he deserved to live…full of regular, pool, and bath water and no more chest infections. We told his brothers he could drink water when he got home. What is our next step now? How do we fix him when we don’t know why he’s broken? We were referred to a esophageal swallowing center at Cedars-Sinai. I called them on Friday the day after the surgery. They are booking a month out and will not see him without a referral from a GI specialist. Frustrated is an understatement. More specialists, more appointments, less answers.
But what I also am is grateful. Grateful for his health…and for now, we are going to ride that wave. I would be remiss if I didn’t recognize each and every one of you for your prayers and support during this time. Thank you for the texts, calls, Facebook posts, messages, hellos at school, and other good juju. I know we both tried to keep up with them and say thank you where we could but if we missed you it wasn’t intentional. This community we have is pretty fantastic.
We love you -The Bislwolds
