Tuesday, May 28, 2013
So TIRED!!!
It has been a long week around here. We are not sure what is going on with Casey. She started doing this crazy thing when we would take her to bed EVERY night. She would look fine for 15-30 minutes, then her heart rate would shoot up and her oxygen would fall. We would have to get oxygen out and load her up with Tylenol- which did not seem to phase her. Then we would get the morphine which also didn't seem to help. She would cry and cry and nothing seemed to help. This would go on until about 1-2AM every night and then she would come down a little to rest- not sleep. We spent the entire day in the ER yesterday getting everything checked out. We came home with increased pain medicine, but no real answers. She got a lot of fluids and is not having much out for wet diapers. We had to cath her today and she was holding in a lot. She did go on her own tonight though. We are hoping with the increased pain medicine that she will finally get some sleep tonight (fingers crossed). We are still planning to get her to the recital on Saturday. If she can get some good rest and we can get a handle on her pain I think she will be fine by Saturday. We will upload pictures and video from the recital. We can't wait. I am sure she will steal the show.
Saturday, May 18, 2013
Another Hospital Visit
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.
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.
Saturday, May 04, 2013
Casey Turns 7 - Take 2
Casey has been getting stronger by the day. After a great week we decided she was up for her birthday celebration with her friends. She was so excited last night about seeing her friends that she could not even get to sleep. She got all dressed up today in her My Little Pony dress, the matching hair bow, her pink/purple hair extensions, the whole nine yards. She looked awfully cute.
The baker that did her dream cake on her birthday (Piece of Cake) did such an amazing job we hired her to do another cake for this party too. We ordered a much smaller cake this time, and intended to pay for it. She was so sweet and refused to let us. She knew that we had to postpone this party since Casey was having such a hard time and she wanted to do something nice for Casey (again). This cake came out super cute too, and tasted wonderful as well. We are going to have to get more cakes from her (purchased) in the future.
Casey's friends came over for a couple of hours this afternoon. Our face painter fell through, but we had plenty of other things to do for fun. The kids decorated their own ponies and we all got to visit some. Poor Casey started to tire out after about an hour. She hung in there though and made it close to the end before falling asleep. Early on her tube leaked all over her beautiful dress so she had to have a wardrobe change. Luckily she has plenty of pony clothes. Towards the end of the party she gave me the most pathetic glare I have seen in a long time. She did not need words to tell me "Mom, I am tired. Get me out of this chair." I am so happy her personality is coming back. I missed my little diva.
Now that all of Casey's birthday celebrations are complete, we can start planning the next adventure. She has a dance recital coming up in a few weeks. We can not wait. She has missed a lot of dance lately. Hopefully she can pick up quick and be ready in time for the show. Don't worry- there will be LOTS of pictures and video.
I will do a post in the next few days with more updates on her health. We are still not quite back to baseline, but she is making progress and doing MUCH better. Here are some pictures from the party and the second cake. I think I need to take the camera and make Tim get in some pictures. He had a pony shirt on for Casey and everything and I don't have any pictures of it. Casey's friend and honorary little sister, Sam, helped with blowing out the candles and opening her presents. It's great to have a little sister around when she needs one :)
The baker that did her dream cake on her birthday (Piece of Cake) did such an amazing job we hired her to do another cake for this party too. We ordered a much smaller cake this time, and intended to pay for it. She was so sweet and refused to let us. She knew that we had to postpone this party since Casey was having such a hard time and she wanted to do something nice for Casey (again). This cake came out super cute too, and tasted wonderful as well. We are going to have to get more cakes from her (purchased) in the future.
Casey's friends came over for a couple of hours this afternoon. Our face painter fell through, but we had plenty of other things to do for fun. The kids decorated their own ponies and we all got to visit some. Poor Casey started to tire out after about an hour. She hung in there though and made it close to the end before falling asleep. Early on her tube leaked all over her beautiful dress so she had to have a wardrobe change. Luckily she has plenty of pony clothes. Towards the end of the party she gave me the most pathetic glare I have seen in a long time. She did not need words to tell me "Mom, I am tired. Get me out of this chair." I am so happy her personality is coming back. I missed my little diva.
Now that all of Casey's birthday celebrations are complete, we can start planning the next adventure. She has a dance recital coming up in a few weeks. We can not wait. She has missed a lot of dance lately. Hopefully she can pick up quick and be ready in time for the show. Don't worry- there will be LOTS of pictures and video.
I will do a post in the next few days with more updates on her health. We are still not quite back to baseline, but she is making progress and doing MUCH better. Here are some pictures from the party and the second cake. I think I need to take the camera and make Tim get in some pictures. He had a pony shirt on for Casey and everything and I don't have any pictures of it. Casey's friend and honorary little sister, Sam, helped with blowing out the candles and opening her presents. It's great to have a little sister around when she needs one :)
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