We're starting week four today. It's been 22 days since I took my teen to the emergency room for what I thought would be a bunch of fluids since she hadn't been able to keep food or water down for a few days. I knew once we were there that we'd be admitted but honestly, I thought it would be overnight and they'd be kicking our butts to the curb as soon as possible. That didn't happen. In fact, we were transported via ambulance to the main hospital a few days later and we've been here ever since.
We've been in the hospital before. In fact, this is our third stay this year. However, nothing can prepare you for what the hospital is like when you've been here over three weeks. As hospitals go, this place is incredibly family friendly. There are lots of wonderful nurses, volunteers and activities. Unfortunately, when you've been here a few weeks, the entire place kind of seems like Bad Vegas. You no longer have any idea what day it is or the time. And, you definitely are not winning. It's beige, cold and the artificial dry air sucks the life out of your skin. It's also boring as hell.
In three weeks, I've only left my teenager for three nights. The rest of the time I've been here to try to take care of her, keep her company and make sure she remains upbeat. It's a hard job that's made even more difficult by the sobbing kids in other rooms that don't have parents with them because they have other siblings, or the parents have to work or even sadder, aren't allowed to see their kids. This is a reality that you don't see when you're here for a few days because you aren't on the same floor as children that have been here for a while. When you have a short-term stay, you remain blissfully unaware of the people who are around you because you know you'll be out of here as soon as your child is stable. When you're here for the long haul, you learn that your child's life, even though touched by chronic illness, is pretty incredible.
I can't imagine leaving my child for a few days even if they are being cared for around the clock. Sadly, it happens all the time and honestly, there aren't enough volunteers here to hold all the babies or read to all the children that are alone for whatever reason and just need to know that they are not only loved, but that they matter. If you're ever looking for a way to fill a Sunday, volunteer at your local children's hospital. It's the most lonely day of all.
Starting week four is daunting
While we were told that the recovery from SMA Syndrome is slow, I think both Rosie and I are shocked that we've been here 22 days and she hasn't progressed much. We're stalled for a number of reasons. Rosie had high kidney numbers on admission. This limited the medications we could give her for pain initially and still is. She's had adverse reactions to both lipids and an anti-nausea drug that actually worked. This has made our team slow to try anything new. And, finally, there's a little bit of mystery surrounding all of her health conditions because they're all rare. Our team listens and researches but it's hard to not wonder if we're doing enough to help her. A couple of days ago, I even told them so. And then there's the blood. It always puts a monkey wrench in everything because it's so fascinating.
The home health company called yesterday to make all the arrangements to come to the hospital to drop all our equipment off and train us so Rosie can be fed at home. Unfortunately, I had to tell her that we weren't leaving this week because she can't tolerate going up on her feeds. She starts dry heaving. They'll be calling back hopefully sooner rather than later. We really need to get out of here. The best thing for my teen is to be home in her own bed, with her puppy where she can actually sleep. You can't get any real rest in the hospital, although I have to give the night nurses a shout-out. Since Rosie's been stable this week, they're doing their best to let her sleep from 10-4 (if she can that is).
So, here's what I want for week four. Dramatic improvement which unfortunately may not happen. If we can't get that, I'd like our team to start thinking outside of the box and actually present us with a couple of solutions that work. Pain and nausea 24/7 are not a good combination. No wonder Rosie can't eat or keep anything down.
As for all of you, keep the well wishes coming. We're still planning to do the Miss Teen Kansas USA pageant whether Rosie has a tube or not. As vocal as we've both been about invisible illness, she will be able to get the message across that even though you're chronically ill, you can't limit yourself or let others limit you. It's an important message that needs to be heard. If you'd like to help her cover her expenses, you can do so here —>> https://www.gofundme.com/jaidenmissksteen. All of the funds that remain will be donated back to our local children's hospital to help other children in need. We're keeping our spirits up and hoping that week four will be our last!