This weekend didn't *quite* go as planned. Let's take it one day at a time...
Friday:
I did enjoy a lunch date with Josh, but I did not finish that paper. Literature reviews are like 200% more painful to write than a regular research paper. It definitely didn't get done on Friday. We did go to physical therapy and the pediatrician's appointment (and get a script for oral steroids and a switch from Qvar to Advair in an attempt to curtail all the wheezing), but because of that KayTar missed out on trick or treating with her class. She was a little bummed. However, when we were at PT I got a call from the metabolic clinic saying that they were going to test her for VLCAD (she had considerable elevations of C14, C16, and C18 in the acylcarnitine profile in her critical labs) and they needed my signature so they could round up some of her DNA (which I assume they have lying around the lab at this point; blood, CSF, muscle tissue, you name it!) and run the test without having to traumatize her yet again. So between PT and the pediatrician's appointment we went by the hospital to sign the forms. KayTar was in her costume from school and it just so happens the hospital was having a fall festival on the main bridge! KayTar had time to play a few games and it totally made up for missing trick or treating with her class. YAY! After the pediatrician's visit, we spent two hours at Walmart waiting for her prescriptions to be ready. Ugh. I was fighting a cold and by the time we were home for the day, everyone kind of collapsed into bed.
Saturday:
BubTar won his last baseball game of the season, so we blew off martial arts and went to get ice cream with a teammate instead. KayTar skipped dance because of her "uncontrollable coughing" as she said. After that we came home to do a little party prep and give KayTar her feed, while the boys ran to get party supplies from the store. Then we went to a birthday party at Chuck E. Cheese. After that we came home so the kids could put on their costumes and we went to the fall festival. It was fun at first, then KayTar started acting a little off her game. She wanted to lay down on the bleachers instead of play. Then she told me she was going to vomit, so we rushed to find a bathroom. She didn't throw up, but she was fading fast...so I called Josh to meet us at the entrance/exit. He carried her to the car and she started to get limp...EPISODE limp. Uh-oh. On the way to the car, BubTar was so upset about missing the helicopter candy drop. He was all, "This is the worst day of my life." Then we heard the drop was in 5 minutes over the loudspeaker, so I told the boys that KayTar and I would hang out in the car so they could go back for the candy. KayTar was very lethargic and she started vomiting at this point. Good thing we keep one of those blue plastic emesis bags in the car...and an extra bucket. The boys came back 45 minutes later and then we headed home. Once we got home, KayTar perked up...just like she does after an episode...and we dosed her with Zofran and assumed the rest of the night would be business as usual, except she wouldn't be sleeping over at my mom's house like we had planned. We still had a few friends come over for game night, but it did NOT go as planned. KayTar continued to vomit in spite of the Zofran. She spiked a fever. She had a headache. We incorporated a game of KayTar Ping Pong into the festivities for game night, which meant Josh and I took turns dashing upstairs when she needed us. We put her in our bed and I spent most of the night up with her. It was rough.
Sunday:
Nothing went to plan on Sunday. KayTar was still sick and I had my paper to work on. While Josh did party prep, I worked on my paper. When it was party time, KayTar and I went to my mom's so she didn't get the guests sick. While there I worked through a chapter of biopsych in the textbook. When we got home, the boys went out to sell popcorn and I took my quiz...which was over a different chapter than the one I studied! Ack! I still did okay on it, but really hated that I wasted that time studying the wrong material. The boys went to a fall festival and trick or treating while KayTar and I stayed home. She was resting, I was working on my paper and doing laundry. It was kind of a bummer of a Halloween for the girls this year. Though, I did finish my paper!
Over the course of the night, my cold morphed into bronchitis and I woke up to an asthma attack at 4am on Monday. The kids had the day off on Monday, but I still had school (bummer!) so they spent the day with my mom. KayTar seemed to be back to herself, but yesterday she vomited up two of her feeds and I'm not exactly sure why. I think her system isn't quite back to normal from Saturday, but she made it through the school day Tuesday. So did I for that matter, but I'm sure feeling rough. BubTar started vomiting last night, poor kid. Vomiting is such a non-event for KayTar, because it happens so often for her, that I forget what it is like for kids that aren't used to it. Poor BubTar is pretty miserable. Last night, KayTar exclaimed, "It is a rare occasion! I'm not the sick one!" She was a little excited about that, actually. The 'Tars are a bit of a mess at the moment, but hopefully we'll all be over our respective illnesses soon and things will be back to normal around here!
3 comments:
How awful--I'm so sorry about all the sickness and ups and downs. I hope you're on the mend, soon.
That was a rough weekend! I wrote a paper once on VLCAD, it was published in the Medical Journal in our state. It was a case report. I really hope you pinpoint the root of KT's problems, if only to give you peace. Hope this week is going better!
I am just getting over a two week sinus infection/bronchitis. Good luck!
I have gotten so behind on my blog reading!
I knew KayTar was sick and had that horrible mini-episode, but when you combine everything else you had going on that weekend, it just seems overwhelming! Life sure doesn't stop (or even slow down!) when someone is down, does it?
I'm so, so glad you are all doing better as I type this. Halloween 2010 will be one for the books. :)
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