This time around in the hospital with Sophie Kate took a lot more out of me than I had expected. I guess it was b/c we had been outpatient for so long, our last inpatient stay was Feb. 2009, isn't that amazing? I don't like to do a lot of walking around when we are inpatient b/c truthfully I don't like to see what may be outside our tiny room, it literally breaks my heart to see the faces of the other children and parents, b/c I too have so deeply felt so much of what they are feeling.
During my one and only trip to the cafeteria during this stay, I was riding the elevator with two sets of parents whose children had been in the Pediatric Intensive Care Unit (PICU) and were now in regular rooms. I heard them talking together...they were so thankful that their children were out of the PICU, you could just hear it in their voices and see it in their faces. One thing that struck me was when they were talking about actually having a pull out chair to sleep on; you see, when your child is in the PICU you can't sleep in the room with them. The parents claim spots out in the waiting room and bunk with all the other parents of PICU children in uncomfortable chairs probably pushed together into make shift beds.
I found myself quickly humbled...while I had been walking around feeling sorry for myself once again and being a baby that we were back on the 4th floor (which I hate), here these parents were not even able to sleep at the bedside of their child. I can't stand myself at times.
We haven"t been inpatient since SK started having seizures, so she got a nice big sign on her door that said "SEIZURE PRECAUTION" in huge black letters. Another reason I didn't leave the room much, I hated seeing that sign on her door. Seriously y'all it might as well have been a flashing neon sign to all those who walked by, "seizure alert, seizure alert,' in case you didn't know my little girl has seizures. She also had padding around the sides of her bed so that she wouldn't be able to hurt herself during a seizure. These people totally freak when you say seizure and I know I know rightly so. I don't mean to sound unappreciative, but give me a break, when are we going to treat people like individuals instead of one size fits all. There, I'm done.
Everyone still expects me to tell them Sophie Kate's story no less than like 4 times per hospital admission. Seriously, can all the medical people not get together and compare notes. She's just a patient to them, they don't get that I literally have have to shut down a part of myself to do that. I use big scary words like hypoxic ischemic encephalopathy and fundoplication and seizure as well as letters like CP, GERD and CVI. I find myself talking to doctors like I always have...relaying information and exchanging information about the patient we are taking care of. So I shut down another part of myself, b/c unlike for them, this is the most important patient of my life and I can't talk about my girl and keep it all together 24 hours a day, so I go into what I call "complete medical mode" in order to survive it.
Back at home, it is just me and my girl again, but here we are surrounded by our boys and that is exactly where we like to be. She rests and breathes easily asleep on my chest, it's a comfort for her and for me. I wish I could provide this kind of comfort for her all the time and spare her all the pain she has already endured and will continue to endure.
Sophie Kate did really well both Friday and Saturday, Sunday has been a different story. She is not feeling well, the fever has returned and she has vomited a couple of times, not good. They did find a small problem with the surgery she had over a year ago (the second fundoplication). There is a small hernia and we will certainly be talking to her surgeon about that soon. She woke up extremely snotty as well, so it's hard to tell if she is getting sick (coughing, vomiting) from all the "snottiness" or if it's b/c her reflux is back, which could happen with this small hernia thing that could grow into a bigger hernia thing.
Depending on how she does, we will be talking to/seeing some of her doctors this week. Please keep SK in your prayers and please pray that we will get clear direction on this, so that we will know which way to go in treating her and getting her back to feeling better.
Thanks for checking in on us.