10:00 and still going

So much for earlier plans of getting Rebekah to sleep. It's now after 10pm and she is going strong. She isn't being bad, or even fussing. She's just awake. And bored. And ready to be out of this bed and out of this room! :)

When our nurse checked Rebekah's temperature around 9:00 tonight, it was 99.8. Grrrr..... That is still considered low-grade, but if we string a couple of temps like that back to back, I have a feeling we're going to be starting our 24 hour countdown all over again. I'm really, really hoping to be able to get home soon!

I'm getting ready to go to bed myself, so hopefully Rebekah will get the hint and also go to sleep. Here's hoping! :)

Nancy

Maybe, Possibly.....

We might just be hearing whispers and rumors of home!! Rebekah has not had any fever at all today, so we are cautiously excited that she will continue that trend through the night and tomorrow. Overall, Rebekah is doing really well. She is more active, playing and in general ready to be out of the hospital! I, for one, will be elated to get out of the hospital and into a regular sleeping schedule! Hospitals are great when you need them, but they are an awful place to be when you aren't sick! :)

Rebekah was able to go to the Atrium today (the playroom). We had fun making a tie-died shirt with some volunteers that came today. Also, we played with some Little People and a wooden doll house. Rebekah had great fun dropping the toy doctor down the stairs. (Note: I don't think she had any clue that it was supposed to be a doctor, but I found it to be quite humorous!) After all of the excitement and playing, Rebekah has come back to the room and crashed. Maybe she will sleep well tonight!

This afternoon we went down to the radiology floor to have an ultrasound of the lump on the back of Rebekah's neck. Basically, the ultrasound tech and the radiologist have no idea what it is! The radiologist said that if Rebekah was two or three months old, she would have diagnosed it as a hemangioma, but Rebekah is beyond the typical age when hemagniomas develop. The ultrasound did define that it is not a tumor, or hard mass, as would be typical with a cancer. So, the plan is for us to keep an eye on it and when we come back in 3-4 months for Rebekah's heart catheterization, they will do another ultrasound if it has not gone away before then. Of course, if it begins to grow, becomes red, inflamed or any other changes, we will have it imaged again sooner.

Miss Boo is awake and ready for her dinner. I'm hoping to get her in bed fairly early so she can have a good night of sleep. We'll see how that goes! :)

Nancy

Busy Day!

This morning's wake-up call was a trip to have an echocardiogram done. We were not warned about having one last night, so it really was a surprise this morning. Apparently, one or more of the doctors wanted some very specific 3-D pictures of Rebekah's trunk and conduit to see if there was any infection growing inside her heart. We still haven't heard what the results are, but I'm going to assume that no news is good news. If there was a problem, we would have heard by now.

We had no sooner gotten back to our room after the echo then they told us we were headed to x-ray! I barely had enough time to get Rebekah the milk she was asking for! :) The x-rays were to check Rebekah's heart and lungs. Again, we haven't heard anything, so I'm assuming nothing was out of the ordinary. I will be requesting that we discontinue the chest physical therapy if her x-ray looked good. It is one more interruption in our day that we can do without if everything looks as good as the therapists say she sounds.

When we got back from x-ray, I had a few minutes to feed Rebekah some breakfast, then it was time for the doctors to come in for rounds. Not much new information there. A few days ago, the doctors had thought that we might be dealing with a virus of some sort, but the fevers have gone on long enough that there isn't much chance of this being viral. Dr. Hlavacek said that it's about a 50/50 chance of ever determining what these fevers are caused by. He said a lot of the time, post-surgical fevers just come and go with no explanation. One day she could wake up and be fever-free and that will be the end of it. Or, it could be a sign of something else going on, and that is what the doctors are trying to figure out. Dr. Hlavacek said that when a fever gets higher, it is a result of a surge of bacteria (in this case) being let out into the body, and the fever is the body's signal that white blood cells are going off to fight the infection. So, ideally, he would like to get blood samples and cultures when Rebekah's fever is higher than 101 so they will have the best chance of figuring out what's going on. I'm not sure of all of the tests he is thinking of, but one is going to be a urinalysis to see if Rebekah has a UTI. She has never had one before, and doesn't really act like she has one now, but he's going to rule it out. Other than that, he said they were going to do some blood tests that were "a little outside of the box" to see if they can pinpoint this fever thing.

So, while I am very grateful that we are not dealing with something much, much worse, it is very frustrating to be here with no end in sight. Especially with an increasingly bored little girl! Rebekah is not able to go to the playroom, or interact with other patients because we don't know the cause of her fever, and we certainly don't want to spread something to another patient. We're just taking things one day at a time!

The good news is that one of the physical therapists brought a play mat and a bench so that Rebekah can be out of her crib and playing on the floor. We played on the mat for a couple of hours this afternoon. Rebekah is sitting very well without support, and she did a bit of crawling Rebekah-style today. We had wondered if supporting her arms to crawl would be too much pressure on her chest and incision, but apparently it did not bother her at all. She didn't even hesitate, so we are excited about that!

That's pretty much the latest from 781! Looks like we'll be hanging around a while longer!

Nancy