Hospital Frequent Flyer

Although Ayla has had great relief from her Crohn's in the past 6 months, she certainly has not steered clear of the hospital.  In fact, we just returned home yesterday from a two night stay at the luxurious CPMC in San Francisco, and this was our fourth visit in 6 months.  

I am very public about when Ayla gets sick.  Our extended family and all Facebook friends know this well.  For one thing, it increases overall awareness of Crohn's disease, which is so important.  This disease is so widespread and yet so publicly underrepresented!  But my main intention for announcing Ayla's bouts with illness is to gather positive energy for a quick healing.  We ask, and our people are so generous with it.  It makes us feel loved and supported, and more importantly, it works for Ayla!  Her acute illnesses have been quick, and our stays at the hospital have become shorter and shorter.  We are blessed with SO MUCH LOVE, it's ASTONISHING!  Keep a lookout for writings in the sky: "Ayla Rae now accepting prayers, love, positive vibes, intentions, and meditations!"  

I would like to give a proper explanation for why Ayla is in the hospital so much, despite her Crohn's being under control.  She is on 3 pharmaceuticals to control her symptoms, two of which are immunosuppresants, which leaves her far more apt to pick up a bacteria or virus than a healthy child.  Once the bug gets in her, her illness is more intense, and seems to last longer (even abrasions take longer to heal).  One of Ayla's medications, Remicade, is administered intravenously every 7 weeks.  Two years ago we had a port-a-cath, which connects to a central line, surgically placed in her chest to make these infusions and her copious blood draws easier.  

Here's her "port" when it's not accessed at the hospital.  However, usually it doesn't have those three red dots on the bottom left.  Those were a result of an access gone bad.  Poor girl was very upset that day.

Like all other medical interventions, a port-a-cath comes with risks, and with this is it a possible CENTRAL LINE INFECTION = DANGER!  Anytime Ayla gets a fever of 101 or higher, we have to suspect a central line infection and take her into the hospital for testing and IV antibiotics.  

So now you might be able to imagine this cycle of madness: Immunosuppression + Central Line = Hospital Frequent Flyer.  

Can we please get some miles for this???

Unfortunately this last hospital stay also fell on her 3rd birthday.  Yep.  LAME!  But we did manage to squeeze in a sweet little birthday celebration before we realized she was sick... 

She enjoyed her party despite her lack of energy.  We were vaguely suspicious that something was off, but had no idea a 103.4 fever was around the corner.

Custom-made birthday crown for our SuperAyla!

And we did more celebrating in the hospital...where everybody knows her name (sung to the "Cheers" tune, of course).

Daddy brought in a large suitcase of gifts that had yet to be unwrapped before our rapid departure to the hospital.

We just got back in our cozy home yesterday.  Let's hope/pray/meditate/etc that we're here to stay for a very very very long time.