New Record

Every so often I convince myself I have learned all I need to know to manage Casey’s care.  I am always wrong on that one.  Sometimes it is big things I have to learn sometimes small, but I am always learning something new.  She does like to keep us all on our toes.

Over the 7 plus years we have had more than our share of pneumonias.  We have gotten really good at spotting them early on and taking the steps to get ahead of them and avoid hospital stays.  We have a well stocked home (we call it the BICU- Barnes ICU) with all of the tools we need to fight pneumonia and manage Casey’s other medical needs.

For a little while now Casey has just been off and we could not figure it out.  Last week we got the diagnosis of pneumonia and we were stumped.  She did not act like she usually does with pneumonia.  Everything seemed so different, but we went with it and have been trying to get her over it since.  The low blood count added some complications, but we thought we were on top of things.

After yesterday’s labs we felt fine keeping her home and letting her rest then retest next week.  She had a rough night and was looking pretty bad this morning.  There was some GI blood (not as much as Saturday, but some) and her heart rate was really high again/still.  She just seemed miserable.  After talking with her nurse we decided to go ahead and call her pediatrician.  We knew that would most likely result in a trip to the hospital, but if that’s what she needs then that’s what we will do.

In order to avoid the ER and make the trip as short as possible we got Casey’s palliative team involved as well.  It took a couple of phone calls, but just before lunch they called and had a room for us.  The plan was to come in, get some blood, and then get back out.  They want Casey as far away from the hospital germs as possible.

After we got into her room the palliative doctor came in and was able to put some pieces together for us.  Casey’s previous pneumonias have been aspiration pneumonia (infections caused by fluids that she has gotten into her lungs that should not be there- refluxed food, secretions, etc).  This is not an aspiration pneumonia, but something new for us.  This is called Mycoplasma Pneumonia.  One of the symptoms with this type of pneumonia include Hemolytic Anemia.  Another symptom is ear infections, which Casey has now and I did not even mention since she gets them fairly often.  This explains so much.  This is why we were not able to identify it as a pneumonia early on, this is why she has not been able to replenish her blood count, it all makes sense now.  And, I have learned about a new medical issue yet again.


The doctor said that a while back they use to test for this by taking blood and putting it in ice water.  If it had little clusters form it was this type of pneumonia.  Of course, even though that method worked, they now use much more complex testing for diagnosis.  He has seen enough of these over the years to just spot the symptoms right off.

Now that we know what we are dealing with and Casey has gotten some blood, hopefully we can get her over this and just relax for a while.  As much as we really did not want to come to the hospital, if all future visits can go like this I think we are all set.  We were in around lunch and home before 8PM.  It is the shortest hospital stay ever for our little one.  Her vitals all look much better and she is now snuggled up and tucked in for the night in her own bed.

Thanks again for all of the thoughts and prayers.  She is looking much better tonight.  We are looking forward to a nice quiet Thanksgiving weekend at home now.

This entry was posted in Casey.