Rare Mama Life… Medical Fights (and Victories!)

Soooo Hailee is in surgery as we speak! The ENT has already put in her ear tubes (a surgery I almost forgot was being done at the same time…) and now it’s the complicated hip part. So while we wait for Hailee’s surgery to be done I thought I’d share another repeat trauma medical mamas go through: fighting with strangers to protect your child. 

It is exhausting. Let’s start with that. There’s just so much anxiety and adrenaline wrapped up in little moments that complete suck all the life energy out of you. Because I’m not trying to be an entitled bitch, I’m just trying to take care of my kid. I remember the first big fight was when I was out of town on a college counselor tour in upstate NY and I had to schedule a follow-up MRI and spinal tap and wanted them to be on the same day because Hailee is an intubation risk and we like to put her out just once if possible and combine procedures. And I had to explain that to like 5 different people and kept getting the run around. Meanwhile I only had to schedule these things in the first place because there happened to be an aspergillus outbreak in the operating room when they opened up Hailee’s skull - the hospital’s fault. So I got to be that person on the college tour who sneaks off to the side for multiple phone conversations where I have to be firm and strong without losing my shit and crying. Because it is so unfair that I have to ask these questions to begin with and then when I have to fight with people just to keep my child safe, things reach a new level of stressful. 

When Hailee had guided growth surgery on her knees in October 2020 the hospital wanted to put us in a double room for recovery and I about lost my shit. Her metabolic disease and all the respiratory issues that come with it make her high-risk for severe COVID and this was before vaccines were available. It’s honestly terrifying to think you might be placed in a room with another family who is less strict about their COVID precautions, when you don’t know what their vaccination status might be, etc. Once again I had to escalate and fight - always on the verge of tears and breaking down - in order to keep her safe. And yes, we ended up in a single.

When we knew that child COVID vaccinations were imminent, I asked Hailee’s geneticist to write up a letter for us to bring to her appointment because I was terrified they would take a look at her stature (solid 3-year old) and refuse to give her the shot. I brought this along with her diagnosis papers, genetic results, etc. because I was so afraid of her being refused. I had so much anxiety that when we went to our scheduled appointment time, I didn’t even want to get out of the car and go with Jason and the kids because I dreaded the fight I was anticipating. Thankfully the Shoreline Fire Department was awesome and whisked us away to a private room as soon as we said “high risk.” But despite that, I still brought the same letter and all the paperwork and anxieties with me when I took the kids to get a second shot, and once again when I took them to get their boosters. 

We worked with Seattle Children’s to apply for a manual wheelchair for Hailee last year and got denied by insurance twice - and the best way to summarize it is to say that it felt like they were telling me my child wasn’t broken enough yet. It was awful. Thankfully, once Hailee was at school in-person, someone from the district who used to work at Children’s in PT volunteered to help us resubmit our application. AND GET THIS. She said that we should apply for a power wheelchair - something Children’s had made me feel was completely out of the question. And two weeks ago, I got the call that insurance approved her power chair!!! It was honestly the best news I got all summer and I still can’t quite believe it. MEDICAL MAMA WIN!!! 

I also had another wonderful victory this week when the hospital called on Monday to schedule her surgery. The woman on the phone brought up staying in a double room again so I tackled that one real quick and had her put a note in. Then she called me back to say that because we had COVID in our household in June we are exempt from having a roommate. WOOHOO!!!! Something good actually came out of 75% of us getting the ‘Rona.

Anyway hopefully that single room pans out as planned because I do not like to fight with people!! Don’t get me wrong, I will absolutely do it with gusto when I have to and when it’s the right thing to do and especially when it comes to keeping my sweet girl safe.