What a roller coaster ride!

The good news is Noelie is feeling better today. She and I went to the doctor yesterday following a few more days of fevers and continued constipation for her, and a further downhill progression of cough and congestion for me.  While the doctor thinks I just have a cold virus, as a precaution he prescribed an antibiotic due to the potential hazards to Miabelle.  As for Noelie, the pediatrician believed that her fevers were not related to a respiratory infection but rather a probable Urinary Tract Infection (UTI), either caused BY the constipation or the cause OF the constipation.  To pinpoint the problem she referred me to the hospital for xrays, bloodwork and urine cultures. 

Needless to say, yesterday was a rough day on our little girl.  I found myself thanking the stars above that she did not have HLH.  There is no way that she could have gone through everything that Miabelle endured last year.  Plus she's incredibly strong!  It literally took 3 of us to hold her down for all of the procedures.  She's no joke.  But I have to admit, I had to laugh a couple of times when she was screaming and flipping out, because I just couldn't help but think of how well Miabelle handled even the scariest of situations from weekly lumbar punctures and biopsies, to CT scans and xrays, and daily meds and exams. When Oli brought Miabelle in yesterday morning for her repeat labwork, she didn't even cry when they drew blood.  Obviously, she's had a lot more experience with this kind of thing than Noelie, and she was so young when the craziness started that it became somewhat normal to her, sadly. 

At any rate, Noelie's initial bloodwork does show an elevated white blood cell count, and her preliminary urine culture report is pointing to a UTI, so the pediatrician prescribed an anti-fungal medication called Bactrim - one of Miabelle's old meds, so we're familiar with it - twice a day, for 14 days.  It goes without saying that we are in for a 2 week battle with her, as she is not as cooperative as her sister when it comes to medication.  But we'll survive - I hope!  The silver lining is that what Noelie has is not infectious, so there's no need to worry about it affecting Miabelle.

As for Miabelle, her labwork looks great!  Her liver enzymes are still slightly elevated but have improved from her last test 2 weeks ago, so she will not have to restart Actigal - woo-hoo!  In addition, they are very encouraged by the fact that despite all of the bugs going around in our house, her immune system has been able to fight it all off.  And the icing on the cake is that her engraftment numbers came back - she's up to 93%!!!  So, barring any virus/illness for her, she will be able to begin her re-immunizations in 10 days! 

So, yesterday was a bit of a roller coaster with a mixed bag of ups and downs.  Time will tell for all of us.  Hopefully Noelie and I begin to turn the corner sooner rather than later.  Fingers crossed!