A quick weekend post

If you have been reading my blog for awhile you know that not a whole lot happens here at the hospital on the weekends, however we do have some things going on, just  to make sure that I don’t get too complacent in my worry.  Let’s see, for the last two days, Keyan has had a difficult time peeing.  Last night, when she hadn’t gone all day, they did a bladder scan and sure enough, her bladder was full, but it wasn’t emptying.  Not only can this be painful, but because Keyan has a history of kidney reflux, we can not have the urine sitting in the bladder for long periods of time.  After numerous theories, and test to rule them out,  It seems to be the medicine that we gave her to slow up the diarrhea has an ingredient that can slow down bladder function as well.  GREAT…never mind that I fought putting her on the drug for two days before I gave in…I knew my gut was telling me something!  So, we stopped the medicine but it takes two to three days to wear off so we just have to wait it out!  See what I mean about the fix for one problem can be the cause of another problem?  So frustrating!

The other thing we have going on is that her little buns are severely breaking down due to rash and pressure.  The things that helps that are diaper cream, time without a diaper, and keeping Keyan on her side.  So, for the next little while, I will be entertaining my five year old while she lays on her side…this just keeps getting more and more fun!  The picture below is of her playing with new Tinkerbelle dominoes.  It was hard work to reach her arm across, but sneaking in a therapy session during play time is always a good thing.  

The docs also finally heard me a little bit about Keyan’s weight gain.  We are going to try switching her diuretic and I am thrilled.  This is not without risk, but while we are in the hospital and checking labs so often, we might as well give it a try and see if we can help her get rid of her extra fluid.  I was so happy to finally have someone listen to me…chalk one up for me.  Even if it is not successful, at least we will have tried.

On a brighter note, Paul’s parents and sister spent the afternoon visiting Keyan.  She slept most of it but did have a few minutes a couple of times when she was interacting with them.  It was nice to have company, and good for them to see what was going on.  Mom Hogan enjoyed washing Keyan’s hair (picture below) and Keyan loved having Aunt Katie read a few stories.

Lastly, two wonderful nurses/friends have offered to take the weekend shifts staying with Keyan and I will be going home tomorrow morning for a night or two.  I am extremely stressed about leaving but I know the other kids need me too and I need a sanity check.  I am so scared to leave but I know I am leaving her in very good hands…lets just hope I can get a little rest so that I can come back rejuvenated for the coming week.  So nervous…but it must be done.  If only I could find a way to clone myself so that I could be in two places at once!