Where do I even begin? Shortly after my last post, Casey started to do much better. She was not needing oxygen except for a few ours every few days. She was getting her spunk back. She had started back to dance, music and therapy. All in all, things were going really well.
We had her follow up with GI 2 weeks ago. Overall they said she “looks” better, but she was losing weight. She got up to 32 in the hospital (with fluids it was probably more like 31). At the appointment she was down to 29. I was concerned, but we decided we would just keep an eye on it and see if she starts trending back up.
A week ago Thursday Casey started to need oxygen again, her heart rate was slowly getting a little higher each day, she was running a low grade temp off and on and she was not having BMs. We had her surgery followup on Monday so we just watched her over the weekend. At the appointment I pointed out all of the issues and by this time (just 1 week after her GI appointment) she was down to 28 pounds. Surgery sent us to get a chest xray to make sure that it was not a lung issue presenting as pain like it did shortly after her surgery. The xray looked fine so it was not the lungs causing the issue. We were told to just keep an eye on her and call if anything else changed or did not get better.
Thursday morning I woke up around 5 to Casey’s alarms going off. I came in to her room and her nurse told me that out of no where Casey’s heart rate just shot up. We gave her tylenol and another laxative (she had been needing a laxative every other day for a week at this point). The laxative gave us some stool, but not much (same as the others we had tried). Her heart rate continued to climb and her temperature did too. We gave her morphine and it did not help either.
Around 7:30 we went to clean her site and saw that it was now leaking old dark blood instead of the usual bile. This was the final straw. Something was going on and I was officially worried. The surgeons office opens at 8 so I was on the phone as soon as they opened. I left a voice mail for the surgeons nurse, but I was really worried and did not feel like we should wait around for her to call me back.
We got Casey dressed and her nurse and I took her to the ER. I was scared that she may have a bowel obstruction or something serious. They got us back right away and took labs and xrays. They told us that the bowel was not obstructed, just horribly backed up. Casey’s white blood count was high indicating some sort of infection. She was at about 100 for her temp when we got all checked in. A couple of hours later they took another temp and she had come up to 102. Thinking that the constipation may have been a big factor in the increasing heart rate and temp they brought in an enema. It worked VERY well, Casey has the biggest poop I have ever seen. We were all hoping that her heart rate and fever would start to come down after that. Sadly they continued to rise. At her next check Casey got up to a 104 fever. She has not been that high since her febrile seizure back in 2007. I was watching her like a hawk waiting for her to start seizing, and luckily she did not (she did do some weird eye twitching, but nothing like she did in 2007 with her last 104 fever). They gave Casey a dose of IV Rocephin and some IV fluids to get her well hydrated. None of these helped at all, nor did the tylenol she was getting every 4 hours.
FINALLY, 11 hours after arriving, we were moved to a room (around 7:30PM). They did not have answers for us, but wanted to keep her overnight to see if anything grew on the cultures taken that morning and to make sure her heart rate came down. After we got to the room Casey got some morphine and was able to settle a little bit. 4 hours later she got another dose of morphine and her temperature had been hanging out right at 99 since about 6PM her heart rate was slowly coming down too. At 1:30 AM her temp was starting to go up as was her heart rate. They gave her some tylenol and the rest of the night went really well. Her heart rate started to come down again and by 5 her temperature was back to baseline and she had another good BM. Her heart rate was still elevated, but nothing we have not dealt with at home 100’s of times.
Around 9AM the doctors told us that nothing had grown yet and since Casey looked so much better we could get out of there as soon as they got all of her paperwork done. Tim had come up for a little bit the evening before, but had a ton of work (taking off most of April did not help) so he had to get back home. I called him to let him know we were going to be discharged soon so that he could come and pick us up. This was the shortest hospital stay we have ever had. They are still watching her cultures to see if anything grows, but she is home. We got home around lunch yesterday. Casey is wiped out, and we are trying to just keep her calm and resting this weekend. I will call tomorrow to see if anything has shown up yet. If not, I guess this will go down as yet 1 more “Caseyism”.
On a good note, when she made it back to dance this week she picked up her costume for the upcoming recital. She is going to be so cute!!! I can not wait to see her on stage. Here is a picture of Casey practicing for the big show.
