Another rough day

I am not sure what to write, so this may end up being a bunch of rambling..if so, I am sorry.

Nothing went right today.  I really wouldn’t need to write any more because that sums up the entire day.  Keyan continues to fight diarrhea, low grade fevers, her stomach is very distended, and she just feels an overall crumminess! The infection disease doctor came in this morning to tell me that the cultures had grown to the point that they could tell that the antifungal that they started yesterday for the yeast is not the right treatment.  The type of yeast she has is resistant to the more common therapy, that means that she went 24 hours without treatment…not the news we were hoping for!  No wonder she is still feeling yucky!  We have the right medicine going now, so it should start making a difference.  So, because yeast is so persistent, and she was untreated, she needs to have an echo done of her heart, a kidney ultrasound, a dilated eye exam, and a urine specimen by catheter.  these are all done in case the yeast has “landed” other places.  Some of it was done today, some will not be done until next week.  Which brings me to the other bad news….because we do not have negative cultures yet and she does not have a line that we can go home with, we will have to stay here until the end of next week….also not the news we wanted to hear!

We also got word that the insurance company has denied our request for additional nursing hours.  They are willing to send out skilled nurses to check her vitals, but not a nurse to actually take care of her.  I told them that could take their offer and do you know what with it.  I need help, not another appointment!!!  I HATE insurance battles. 

Let’s see, what else?  My birthday is Saturday, and once again, I will be at the hospital….the 4th of July is my favorite holiday, and we will spend it here.  But, what can we expect?  We have spent plenty of holidays here, and I guess if Keyan can spend her birthday here, why not me?  Those are just the facts when you spend more time in the hospital than you do at home.

I guess that the hardest thing to hear today was that several of the doctors feel that this cycle of things is just showing us that Keyan’s intestines are failing.  No one knows why, no one knows what to do about it, no one wants to talk about what that means, but none of it is good.  I fear for the day that she can not fight the infection off.  That is where we are headed if we can’t get further answers.  Basically, we need a second opinion, another set of eyes and brains.  We have our approval for outpatient appointments in Cincinnati, but she has to stay healthy enough to go.  The reality is that we have been trying to get there for three years.  Paul and I are doing a lot of brainstorming on our next step in the whole thing, but none of the decisions are easy.

So, I rambled long enough…not a whole lot of emotions because I can’t even go there right now.  This is tough…very, very tough.