Sunday, December 21, 2014

Don't Freak Out, But...

So, the first thing you should know is that we are ok.  We are all doing fairly well, and everything is going to be fine. 

That being said, Ella is in the hospital.  But don't worry!  Remember, everything is going to be fine!

Here's the short version: Ella was admitted to the hospital on Friday night /Saturday morning with a low red blood cell count.  After running a bunch of tests, we now know that she has cold agglutinin disease, which means her immune system is attacking the red blood cells.  We are waiting for her levels to go back up, and then she can go home.  We aren't sure how long this will take, but she is acting like her normal self, albeit her normal self with very little sleep (read: cranky and bossy).

Here's the long story: On Monday morning, Ella had a pink eye.  We don't know if this is related or not, but it could be.  She got some eye drops from urgent care, and we went on our way.  On Thursday morning, she woke up with a fever of 103.2.  As the day wore on, the fever went down, but then I noticed that her urine was red.  We're talking dark red.  Glass of cranberry juice red.  Which, obviously, makes me think of blood.  And that is concerning.  So we went to the urgent care again.  They took a urine sample, decided it was likely a UTI, and sent her home with antibiotics, explaining that it is standard procedure to start someone her age on antibiotics before the lab results are in, just to be cautious.  Friday morning she wasn't much better, and in fact started throwing up.  Her urine was still quite red, and we spent all day resting.  Friday night, I gave her a bath, and noticed while drying her off that she had a distinct yellow tinge to her.  And her lips were very pale.  But she seemed better than she had all day, except for the yellow skin.  I left a message with the after hours doctor, and while waiting for a response put her to bed.  After calling back and discovering typo in my phone number, I finally talked to the doctor, who said, "This is not normal.  She needs to be seen.  But it can probably wait until morning."  5 minutes later, she called back.  She had looked at her labs and discovered that the results were in: no sign of infection.  So....that's not good.  And she told us to take her to the ER right away. 

Off she went, with Clark.  They were admitted to the PICU at 2am, met lots of doctors, ran lots of tests, and today one of those tests came back positive.  She has something called cold agglutinin disease, which is where the immune system attacks the red blood cells and breaks them down (hemolytic anemia).  So there wasn't any actual blood in her urine, just broken down red blood cells (hemoglobin).  And all the dead RBCs caused an increase in bilirubin, which makes her yellow.  We are still waiting for the results of another test to see if there is a specific cause of this craziness, or if it is an unexplained mystery why this started up.  Either we treat with an antibiotic, or we wait it out.  The thing they are looking for is the hemoglobin levels increasing.  Currently, they are decreasing.  So...we are waiting. 

Timing is pretty bad as Christmas is this week, and it's uncertain if she'll be home in time. The thought of Christmas in the hospital is pretty depressing.  So, if you could pray for our Ella, it would be ever so appreciated.


Judy said...

oh My Shannon. She will definitely be in our prayers. I wish I could be there and give you a hug. I hope you feel this virtual hug through the computer.

Erin said...

Prayers on their way! You have a great attitude about it, you're awesome. Please keep us updated. <3

Jennifer said...

Yikes! We'll send prayers your way!

Kay Hinton said...

Thinking of you and praying for you!