Change. Most people fear it because they find it uncomfortable. We, at the CB home, love it because it means that we're getting away from the way things were. Moving in another direction. But, there's one thing I've learned on this journey trying to navigate chronic illness. The more things change, the more they stay the same.
My teenager has been unable to hold any food down since Friday and since Sunday, cannot tolerate fluids. I took her to the ER where she was promptly admitted. Today, I had a conversation with the doctor that went like this:
“I want to find blood in her gastric contents,” she said. (they had failed to tell us to keep any vomit the night before so we were a little behind on her schedule).
“Good luck,” I said. “The blood's not there.”
I have extensive experience with my child's health. Not only has she been spitting up blood since December of 2014, we've had countless doctors search for the source. When they couldn't find it, they searched for the reason. All of them failed until a couple weeks ago when we got a diagnosis- Ehlers-Danlos Syndrome. It made sense. She could bleed quickly, then clot and stop (and we know she clots well because we've had all those tests too).
Suddenly, we're in the hospital with her vomiting like I've never seen her before and they're worried about the blood. To them it's fascinating. To me, it's every day life and it's not the problem right now.
“But she had blood in her urine,” she said.
‘Yeah, so what. That's common. Happens all the time,” I countered.
“Have you seen Nephrology,” she asked.
That's when I politely explained for the fourth or fifth time, we've seen every ology. There is not a specialist in the hospital we haven't seen, except for Genetics who called to say they couldn't help us (interesting, since she has a genetic disorder). Then I had to tell her, in a very nice manner, that I really didn't give a shit about the blood. We needed to find the cause of my teen's vomiting and stop it because it was new. The blood was old. As interesting as it may be, it's not to us anymore. Help us fix this problem so we can go home.
I just ran home to shower and write this update as the hospital has crappy cell service. As I began, the title of the blog flew into my head immediately. It was so spot on, it was scary.
The more things change, the more they stay the same
In two years, we've changed everything. Our lives are dramatically different. All of us look at life with a completely different perspective. We don't take anything for granted. And, over the course of battling doctors, hospitals and the insurance company, we've all gotten smart. We research and know what we're talking about. What makes this difficult is not the ignorance of doctors. It's the novelty when they see us. It's a new mystery to them. It's not to us. It's like an old, familiar, itchy sweater that you continue to put on, even though you know better.
So, I'm heading back to the hospital. I assume we won't be going home tomorrow because we know absolutely nothing except that she doesn't have a bowel obstruction. There's a very good chance that she does have C Diff but she wasn't able to give them a stool sample until this afternoon so we're waiting to hear back. They did stop her Clindamyacin for Cellulitis because it may have caused the C Diff. I am concerned because she's been off her regular medications for a few days, many of which say to never stop abruptly because they have horrible side effects. And, once again she is missing more school. Yesterday, we made the difficult decision to take her homebound.
Thank you everyone for your Facebook messages, texts and calls. If, God forbid, we're still in the hospital late this week, I will take some of you up on help. But all I ask now, is please, pray for change.