This past weekend, my son was admitted for high fevers again and they just wanted to do observation to make sure he didn’t have a seizure. This is the third time since April that he’s been admitted. All of this started back in December. We don’t know why we have a sick baby, but we do, and it’s tough.
Today I thought we were going to walk out of his appointment with a, “his WBCs look great! We’ll just monitor every other week or so to make sure it stays that way.” But we didn’t. Instead, we end up leaving with a VIP card and two lab draws per week until his next follow up. You don’t know how mad this makes me as a mom to know that some random doctor told me that his WBCs were good this weekend, and all of a sudden, my son’s got severe neutropenia and can cut the ER line with this VIP card? It makes me furious that they even released him from the hospital. To be fair, we were scolded for bringing him to the wrong Children’s hospital…
Now I see why…
This makes me feel like an inadequate parent sometimes. Way to make it about yourself, Jakki. I know, I know… I feel awful even saying it honestly, but it’s the truth! When Maverick is sick and I’m helpless, it’s hard to sit there and watch him go through it. It’s hard to watch him get poked and it’s hard to watch him be uncomfortable… I do appreciate everyone that tells me I’m some stellar mom for being able to support Maverick through all of it, but it doesn’t feel stellar.
I never thought that I’d have the kid that went through all of this treatment. It’s almost as if I were living in a movie, and every time we find out not-so-good news, it’s like a new plot twist episode. Sometimes it feels surreal that this is all happening. Like someone is playing a fucking joke on us… I know, weird.
But alas, here I am at 2 AM, researching viral infections that can suppress your immune system for months and cause severe neutropenia. Here I am researching CMV, EBV, HHV, all the hepatitis, and really not coming up with an answer. Nothing fits Maverick’s case yet, and it’s got me more worried. I probably should’ve just let the doctors do all the work… But I’m a nurse, and right now, the only person I’m interested in being a nurse for is my son.