June 2012 Hospital Stay...part 1

I'm going to start this post with a synapsis on Grace. As most of you know, she was in the hospital from Saturday night until Wednesday morning. She was sick much longer than that, however. Last Monday, Memorial Day, Grace started acting "off". She had been outside a bit that day, but not too long and not in the direct sunlight. At 2pm, my mom walked the kids the 1/2 block to the end of the road to watch the parade. (I was at work). I got home at 2:15, and went to meet them. Josiah came running to me, but Grace was lagging behind, limping almost as though she were hurt. I found out at that point that she had fallen down the last step on the porch. I attributed her somewhat strange behavior to that for about an hour, but at 3 pm she couldn't keep her eyes open and just wanted to sleep. She couldn't focus on anything. I didn't see a seizure in that time, but one seemed imminent. So, off to the ER we went. Grace has a harder time than most people regulating her temperature, because the hypothalamus is smack in the middle of the portion of her brain most affected by the stroke. We were there for a while, the doctor basically probably thought I was crazy, but if she was going to have one of those big, nasty, heat induced seizures, it wasn't going to be at home if I could help it!! We went home later with a sheet for a contusion, and the doctor said she had possibly had a slight heat stroke. No doubt she had.

Fast forward to Tuesday. She got up, and was happy as could be to go to school. She had a great day at school, with the exception of a few staring spells. However, Tuesday night, she woke up in the night just sobbing that her belly hurt. By Wednesday morning, she had a temp and a small amount of loose stool. I kept her home that day, figuring she had a stomach bug. She acted sick the whole day, but other than a low grade temp, was asymptomatic. We got through the day and night, and I figured Thursday would be better. Wrong. Thursday, my mom called me while at work and said she was now complaining of terrible pain in her belly, directly above where her shunt drains. Off to the pediatrician she went for a check. Sure enough, she was extremely tender in that area and so they sent her in for an xray...which came back ok. Thank God for that. So, we once again figured she had a virus and it was taking a long time to fully hit her. The whole time, a low grade temp continued. Friday and Saturday went by, both days with no energy and fever. However, with some Tylenol, she was better. Saturday afternoon, we even went to a graduation party. She wasn't the life of the party, but she did want to be there. Saturday night, though was a different story. I was a hopeful Mommy, I had our church clothes all ready and laid out. At about midnight, she started crying. I got up and went to her, asking her what was wrong. Her normal response is "it's nothing". This time she said, "It's my body." Then she turned over toward the wall, which puts her directly on her right side. As she turned that way, she started to just cry and scream in agony. Immediately, my mind went to the appendix. I got her in the car and took her to the ER, where they also immediately thought it was her appendix. A CT came back normal for the appendix though, but her bowel was totally full. By 5am,we had been admitted, because her white blood cell count was also high.

That morning, a pediatric surgeon came in and talked to us. He didn't want to go crazy with opening her up, so we started with trying to empty the bowels somewhat naturally, with molasses and whole milk enemas, milk of magnesia, and miralax. At this point, she started throwing up. However, we're not sure if it was because of the nasty stuff in her drinks or her illness. The first enema really had no output, but the second did a pretty good job. By Tuesday, she was considered cleaned out, and we were discussing coming home. Wednesday morning, her repeat labs were cancelled, and we went home. Where she just got worse. She was completely lethargic, refused to eat or drink, totally incontinent, and all she wanted to do was sleep. Not our normal Gracie at all. I let Wednesday and Thursday go by, thinking the enemas and hospital stay really took it out of her and she would perk up by Friday. Friday was her kindergarten graduation. I didn't plan to send her to it, but I did plan on us going so she would still be a part of it. She wanted nothing to do with it. We did go, and she did perk up for about 30 seconds, when her teacher handed her the diploma. All in all, though, she sat there, trying not to cry (sometimes failing miserably) and wanting to go home and go to bed. We left there, and I called her pediatricians office and made a recheck for 1:30 that afternoon. I was due at work at noon, but told them there was a chance I might have to leave. At 2:15 I got the call that they were sending us to Rochester. Her doctor just wasn't comfortable with her continued low grade fevers, pain level, lack of appetite or thirst, and lethargy. So...here we are, still with no real answers. I will update later.