This was supposed to be a blog about Aleck’s braces that he got three weeks ago. This was supposed to be where I tell you how good he did getting them on, what a champ he was, how he chose red and blue for his colors, and then enjoyed a lunch of omelets and pancakes at our favorite breakfast joint when it was all through. This was supposed to be the line where I complain a bit about how we have to put his rubber bands on him every night because he lacks the dexterity to put them in his mouth himself. Right here is where I wanted to tell you that we need to get the teeth down before we can even talk about the potential four root canals, he’s going to need to save his mouth from the fall. Right in this line though I was going to tell you that insurance is covering all the orthodonture work which is huge for us and how thankful we are that Medicaid has been a great option for our family. Right now, I want to tell you that it’s amazing how all your priorities can get thrown out the window, or in our case, the car door, with one simple (mis) step.
On 5/9 I was picking Aleck up from school when his left leg got caught in my car door, he fell backward and landed funny (hahahahahahahah…not) on his right leg. Outside of school, with only me and the dog, he screamed that his right leg was broken. He cried that he wanted to go home, but I already knew we were going to the ER. I got him on his feet and used myself like a chair to get him in my car, then climbed out from underneath him into the driver’s seat. We ran home, I left him in the car while I locked up the dog, and grabbed his iPad and charger, a sweatshirt, and some leftover cauliflower pizza…it was going to be a long night. At 6:00 pm we arrived at the ER, he texted his friends, I ate some pizza, and we watched TikTok. Before we left I felt his leg and could see the giant swollen bump protruding out from his AFO. But at Lurie Children’s Hospital, there is no one to help you move a patient from one position to another. I had to explain to the nurse that you weren’t going to get a weight on him because he wasn’t going to stand on your scale. I had to carry him from the chair onto the x-ray table, all 98lbs of him plus the weight of his shoes which have a giant lift in them, and his braces. I had to carry him from the chair onto the bed once we got checked into our room. I feel like regular hospitals have CNAs just to do this, but it was only me and the older X-ray tech in the room and no one was calling anyone to give me a hand.
We finally got into our room and fell into a Friend’s marathon to keep our spirits up. They didn’t want Aleck to eat anything until they could confirm that he wasn’t having surgery that evening. I told the very attractive, very tall, and very strong ortho resident baby that there was NO WAY anyone was performing surgery on Aleck at 9:30 pm that evening when I knew his surgeon would be in the hospital the next day, but they must follow their protocol and I have to wait for everyone to get on my page. Thank goodness my sister came to the hospital with a feast of McDonald’s and some hugs so that when they did confirm he wasn’t having surgery we could sit and eat something way more appetizing than now lukewarm cauliflower pizza. When they came in to confirm that it was a break and that Aleck would have to be in a cast for 6-8 weeks, I looked at my sister and said, “FML” and started to laugh. Aleck asked what “FML” stood for and in my quick thinking, I came up with Funny Mommy Laugh because it wasn’t funny. Can he use crutches, asked the ortho babies. No, he cannot. Can he hop and balance on one leg with assistance? No, he cannot. Are you the only one at home with him? Yes, I am. Cue the looks of horror.
The ortho babies continued to create a splint for Aleck’s leg that ran from his crotch to his ankle with a giant layer of cotton wrapped in plaster and then asked me about sending us home. By now it was 11 pm. Please have us admitted I said, for about the third time that evening. I’m not leaving this hospital without a green light from his surgeon, I’m not leaving this hospital without a care plan for when I get home. But your surgeon isn’t on call right now, they told me. Yes, I know, but you’ll be able to get ahold of her tomorrow so we shall stay until that happens.
By the time we got to our room, it was 1:30 am and we had eaten too much McDonald’s and watched too many episodes of Friends. Our nurse talked to us about having social services come in the next day to help us put a plan of care together for getting us home safely. During the evening there had already been a few conversations about not discharging us until they knew that we could take care of Aleck safely at home. We tried to get some sleep, vitals were checked around 5:45 am, and then Craig arrived around 8 am. I told him the plan; we needed a sign-off from Swaroop before we go home, and we needed a care plan so we could safely care for our now small adult-sized child in our own homes. With that, I had to go and get ready for the luncheon I was photographing in only a few hours. When I got back to the hospital Aleck had gotten a new cast, a small one from his foot to just under his knee, way better than that awful splint. However, social services had not been to our room, and it was now 5:30 pm. I asked the nurses to find me someone, I was very angry at this point. I couldn’t believe that this wasn’t anyone’s priority. When the social worker came, she had absolutely nothing for me. No transportation services, no in-home health care options, and not even a couple of big guys to help us get Aleck home. My parents’ friends are breaking bones left and right at their age and each one of them gets sent home with a care plan, with services already in place to be sure that they can safely be cared for in their homes. My guess is because this is a children’s hospital that’s not a priority. We are supposed to be professional caregivers able to lift small adults and get them safely up and down our six steps and in and out of the wheelchair. I asked the nurses if they had anyone to help with transporting and they sent up a heavier shorter woman in her 60s.
We managed to get Aleck in the car, we managed to get Aleck back to Craig’s apartment, and we also managed to fight for the two-and-a-half hours that we were together. It wasn’t pretty. I got home Wednesday night and cried for hours; I was exhausted on every level. Even though it’s a small break that requires no surgery, Craig and I are kinda screwed until the cast is off. We are working with multiple organizations trying to find help, but it all takes so long. I spoke with many last week and only today am I touching base and getting resources, over a week after the break. I had my weightlifting coach come and spot me to see if I can carry Aleck up the stairs, dead weight, and unable to hold onto me, and I can do it. On Monday my brother-in-law came over to take Aleck down the stairs so I could push him the mile in his chair to school. But on Tuesday morning when I went to call the fire department, the other free option for moving a disabled child, Aleck begged me to do it telling me he knew I could do it. There was something in his eyes that told me how important it is to him to know that I can physically take care of him. I got him down on Tuesday morning, a 6/10 rating by the judges, my dismount wasn’t pretty. On Wednesday morning I got a 10/10. But that’s one week down and we’ve got 5-7 more to go. The after-school program won’t watch Aleck in his current condition so our workdays are now cut short by over two hours. Having sleepovers to cover Aleck because I’m photographing a wedding won’t work either so Craig and I have to tag team everything together. Our families can help but my parents aren’t strong enough, so I’d have to hire someone to be at my apartment with them every time Aleck needs to move, come to the table to eat, or if he has to poop because getting him on my toilet is literally the hardest physical move of them all.
I’m still in disbelief that after a week I don’t have any help. I’m still in disbelief that one of the nation’s top-ranking children’s hospitals has no resources for families like mine, for ortho families with disabilities where something like a simple fracture can derail absolutely everything. I’m still blown away that no one at Lurie seemed to care that we physically shouldn’t be caring for our child without professional services and assistance. I’m heartbroken because this is what I was worrying about when Craig walked out my door on June 1, 2021, that I would not be able to take care of Aleck alone. I’m heartbroken because even though I’ve been training it scared me to carry my child down my stairs. I’m heartbroken because this will happen again so that means I have to find an accessible place to live like right now and I love my apartment so much.