My day started out so well. I knew it was going to be hard since Roland was getting four casts changed, but the positive thing (about the only positive thing) about a hard four-limb removal/recasting is that after it’s all over Rolly sleeps like a rock when we get home. It’s like the nap of champions for an otherwise allergic-to-sleep awake zombie child. There’s a lot of emotional energy that he expends during days like this and sleep is healing for him. I was thinking maybe I could watch something on Netflix. Maybe I could even tackle the dishes. It wasn’t going to be a bad day, at least that’s what I told myself.
Roland was awful hyper this particular Tuesday. He was his tornado self. And I wish I could get a forecast for his levels of destruction before planning anything. But alas I had today and only today to go vote and he had to come with me. The polling place was very close by and I carried my son in there. They gave him my “I voted” sticker, which made him so happy. It should have instead read, “I distracted.” Or better yet: “I did karate moves while mommy held me football style and tried to vote with her other hand. Then I almost knocked over the cardboard booth, yelled hello (my new favorite word) to everyone ignoring me and tried to grab mommy’s ballot while loudly saying, ‘daaaaaaaaaaaadoooooooooooooooooo!’ which I’m pretty sure means, ‘Don’t look at that, look at me!’ And then they gave me this sticker! Best voting day ever.”
Then straight from polling place to hospital. It wasn’t until we pulled up to our spot in the loud underground parking garage that Roland got a reality check and calmed down from his happy madness. He wasn’t even singing or kicking when we entered the double doors. He was clinging to me by the time we went back into the clinic rooms. People commented on how good he was being. That’s fear, people.
We hit a snag when entering clinic. My husband had a career change recently (last week) and our insurance is through him. And even though we were suppose to have insurance during the transition, it had not been activated. And they would not remove any of Roland’s casts without payment or insurance. I was not about to lose weeks of ROM due to money so after many phone calls that went nowhere I ended up having to pay out of pocket. It was not cheap, but I couldn’t leave my son in four casts!
As for some good news, Roland is 50 degrees away from straight knees. He has 60 degrees of bend in his right arm and 75ish in his left. (Up from, 5!!!) That means we’re looking at only another month or less of casting his upper body before going into splints and back to daily stretching. His feet also look good. He has a flat left foot and is 20 degrees away from flat in his stubborn right foot. No idea how much longer lower body casting will be. But I’m encouraged!
After the buzzing saw, clean up and recasting was behind us I got a phone call from the school nurse. Laelia had a stye on her right eye that was going away, but had developed a bad stye on her left eye recently that had just ballooned overnight. We think Halloween makeup didn’t help. Well the left stye had burst during class and I needed to pick her up immediately. I am literally right next to the ER at Children’s and so I ask where I should take her. They tell me the pediatrician. So I go to Laelia’s school, pick her up from the nurse’s office and drive straight to her pediatrician. I am a bit panicked because her eye looks so bad. Eventually a nurse comes out and says, “Yes you definitely have to see the doctor. You don’t have an appointment, but we’ll fit you in.” (I’ll fast forward the story past the waiting drama followed by Laelia needs to go potty drama, followed by poop blow out by Roland and realizing I did not pack wet wipes drama.) All of the sudden the receptionist goes, “Wait it’s saying your insurance is not activated.” I completely forgot. Didn’t the casting clinic work out fine? Oh right I paid out of pocket. I was really not thinking straight. I tried making all the same phone calls to no avail. I asked them to please just see my daughter and I would make payments if I had to.
Well two hours later both her pediatrician and another pediatrician told us, “Go to the ER. Now.” So now I’m loading both children up and we’re rushing to the emergency room WHERE I HAD JUST BEEN! (Casting clinic shares its rooms with the ER.) At this point Laelia’s eye had filled with puss and she couldn’t see. As she would put it, “But that’s what my other eye is for! Can we stop for tacos?”
We had one funny moment when I storm into the ER with one kid in a wheelchair and the other in four casts where the guy behind the desk asks, “I need both their names. Was it a car accident?” I’m like, “No, you’re just seeing the cyclops.”
They said they could see her right away so I was starting to relax. Then I hear, “Do you have insurance?” Acccccccccccccc!!! Yes. No. Well it’s the ER so they saw her anyway. The doctor said he thought it looked infected so they got a culture and prescribed an antibiotic and eye drops. But when he cleaned up her eye she started screaming. So he had me finish it up while he went to fill out the prescriptions. So I’m being so very careful but notice my towel is getting pink. Then all of the sudden, just like a horror movie, blood starting gushing from Laelia’s eye. It was like a red flood. Literally. Think the scariest thing you’ve ever seen. Laelia was screaming in pain. Roland was screaming to be louder than Laelia. I had to leave them both screaming and run from the room to get someone to help. In my mind I thought for sure my daughter would go blind and my son would be traumatized. (He is still hurting with four newly placed casts and no nap.) Doctors rush in.
It turns out that she may have had multiple styes and one popped at school while the deeper one on the inside of her eyelid popped and bled after I tried to clean it. So great. My daughter’s eye just decided to explode today… twice.
A little puffy and crusty three days earlier.
But she’s still happy. (There’s one on her right eye too.)
One day later.
But she’s still happy.
It pops at school into her eyeball.
Picked her up from school like this. (Note the smile. Really?)
At the pediatrician.
Partially blind in that eye at this point.
Home from the ER.
Can I have ice cream?
Roland threw hysterics off and on from that point forward. Through the horror, through the waiting, through the check out and anytime I wasn’t looking at him. He wanted his nap, darn it. Then he quieted down for a moment, looked up at me and threw up. Everywhere.
WHAT HAPPENED TO MY NAP?!!!!!!
Followed by *puuuuuuuuuuuuuuuke*
We were a wreck by the time I got to the check out desk. At this point I was upset about not having insurance… or wet wipes. They were telling me a ton of information about how to pay for this ER visit that I only half heard. Both my kids were crying and I still had to get Laelia’s antibiotics. I just kept nodding and signing things and then they let me leave.
We walked down the road into the pharmacy. While Roland screamed and knocked things off the display shelves (yeah they loved us) I handed the lady my prescription paperwork and it wasn’t, I swear, until she asked for my insurance card that I remembered, oh yeah, I DON’T HAVE INSURANCE! Accccccccccccccccc!!! After some back and forth, I ended up paying out of pocket for the meds since we needed them immediately.
I was walking back to my car (on the other side of the world) when Roland’s front stroller wheels decided to stop making any turns. So I was pushing him while dragging Laelia’s wheelchair behind me with her facing backwards, then having to stop and readjust every two feet. Thankfully a good Samaritan saw me and, even though we were going the opposite direction and well out of her way, she grabbed Laelia’s wheelchair and started small talk with her while following me to where they stab and rob people… I mean the RMDH parking garage. Specifically into the farthest, darkest corner of it where I parked when it was daylight and now was pitch black. The lady was nice enough to help without asking why my son was in four casts or my daughter had blood all over her face. Smart woman.
I had been calling my husband all day, but I had his other number to his other work phone that he had in his bag. He wasn’t able to find out we were in the ER for several hours. In fact it wasn’t until the very end of the day that he was able to come help. He made it to the ER just as we were leaving! We headed in two directions so Charley could get the tacos and I could get the ice cream for the little cyclops princess. Charley then fed the kids and gave me a little break to check email. The first email I read was letting me know the child (orphan) we had been advocating for this month had died.
I just burst into tears. My problems are so small. My insurance issues so petty. My children are happy and healthy most of the time. They are loved. This little seven, no, eight week old baby girl died alone and unloved. Three families had been interested in her. Friends had offered to blog about her and were working on their posts. And just like that. Gone. I haven’t gotten any details, but last I heard she had some fluid in her lungs from not being upright (read: held) enough. She was left in a hospital, but not getting the care she needed.
There was a moment where Laelia’s eye looked super gross that I considered for only a moment just going home and doing my best to take care of her there. It was because of my insurance situation. She had an infection and her stye would have burst at home. That would have been awful. And Laelia is the most precious thing in the world to me. But my insurance situation almost kept her from getting the care she needed. For those who don’t have insurance, who can’t afford it, who live without it, well, I just can’t imagine what they face.
Roland screamed off and on until well past midnight. He turned out to be dehydrated from throwing up, but he was able to keep down some water once I got him to drink it slowly. We were up anyway watching the elections. “President Awana” (Laelia’s words) won the election. And I have to say that I was relieved that Obamacare won’t be repealed. It will save lives. It will be there for NICU babies. It will be there for those with preexisting conditions like my two. I know Obamacare is unpopular to some people, but right now I want to give every penny I have to helping those without health insurance. I want to raise funds for those without it, especially those at risk like children or the elderly. I’m heartbroken for these people. I see this need with new eyes. But at least now the Affordable Health Care Act won’t be repealed and more people will get the access to health care that I have enjoyed most of my privileged life. Sorry this didn’t start out to be some political talking point. Definitely with elections having ended I’m not trying to make people think or vote a certain way. But I’ve heard a lot of dumb things during this election (which seemed even more petty as we sat in the hospital), and a few people didn’t stop to think about the hurting human beings they were referring to before spitting out their views on who deserves what. Bottom line: People in different situations than me deserve food and health care. I am not better than them.
It’s now Thursday night. Laelia swallowed a whole pill in a spoonful of apple sauce I’m pretty proud of her. She even held still for her eye drops. Roland threw up his peas and it makes me feel a little better thinking it might be a stomach bug and not stress from what we went through a couple days ago. We ended the night by lighting the candles in the fireplace and singing songs before bed. Laelia knew all the words. Roland… didn’t, but that did not stop him from making noises we’ll call singing. We prayed for the orphans still waiting for families. Especially Aubrey, Elizaveta and Raymond. Then I tucked my children who I’m so so so thankful for into bed. They are gifts to me. I’d go through a hundred days like Tuesday as long as I get to be their mommy.