It was six months ago today that Harry was admitted to the hospital. (Tomorrow will mark six months since he was transferred to St. Louis and given the Stevens-Johnson Syndrome diagnosis.) It seems like it was forever ago, just yesterday, and just a bad dream, all at the same time. I don't want to recount every single detail here. (I'm not sure anyone would want to read that, and it is still a little overwhelming thinking of the whole thing.) What I do want to do is (hopefully) offer some encouragement and advice for parents who find themselves in a similar situation of having a sick kiddo. I know that unsolicited advice is usually pretty obnoxious and annoying, so I will do my best not be that way. I promise!
Some of you may know that Jack was born prematurely and spent the first three weeks of his life in the NICU. At that time, Cory and I, being new parents, were not prepared for what happens when you have a child in the hospital. One good thing that came from that situation, aside from Jack being healthy and happy, is that we learned how to be advocates for our child.
When you are confronted with having a very ill child, it is extremely overwhelming. In our case, with Harry's disease being so rare, it had added complications. When we first mentioned SJS being a possibility, we were told there was no way that could be possible because it was so rare. I'm sure the doctor was thinking to himself something about us checking WebMD and thinking we knew as much as him. And, it probably is annoying, as a doctor, when people come in thinking they know as much as you because they Googled the symptoms. But, it turns out, that guy's diagnosis was wrong, and Cory's research on WebMD, and the diagnosis of a smart resident was right. My point with this story isn't to point fingers. It's to let other parents know that since doctors do know more than you about being doctors, it can be intidimidating. And most of the time, doctors are right. But never feel like you can't ask questions or give your opinions. Nobody cares about your child more than you or knows your child as well as you do. So, if you aren't going to advocate for your child, who will? And, good doctors will care about and listen to what you have to say. Don't be afraid to stand up for your child. When it came time for Harry to be transferred, we insisted that they find the best hospital for this condition. This was not what the doctor had first planned. He was planning on transferring us to the next biggest hospital locally. This most likely would have resulted in Harry being slowly stepped up to bigger and bigger hospitals while getting sicker and sicker. But because we let the doctor know our wishes, he listened to us, and sent Harry to the best place for his condition.
I can think of many other examples of us advocating for him, but I won't bore you with them. My main point is just to be confident in your instincts. You know you want what's best for your kid and are entitled to be included and consulted in all decisions about your child's health and treatment. Trust yourself. Also, most hospitals have a patient advocate you can talk to who can advise you on your rights as a parent and your child's rights as a patient. So, if you are nervous or need guidance, that's a good place to start. I hope that you never need to know this stuff, but if you do have a sick child, hang in there. I know it's tough.
On a happier note, today is Jack's first day of school. (The little kids start next week, so I'll do a back to school wrap up after that.) Tonight, per Harry's request, we will go to the circus. From a ventilator to the circus in six months seems like something to celebrate :)