Hindsight

This might sound strange, but since our whole ordeal with Fionn's health began last June, there really haven't been that many times that I have been really scared about our boy.  Of course, that first month in the hospital was entirely terrifying.  And coming home with Fionn for the first time and leaving the competent care at the hospital was truly scary.  But all the fevers, side effects, hospital stays, procedures and hiccups we've had along the way...none of them have really raised loud alarm bells inside my head.  They were logistically challenging, difficult to manage, emotionally draining...all of that.  Yes.  Of course.  But there was always this feeling that we were on the right course.  Fionn was doing well, responding well.  Everything was to be expected.  

I was not prepared for the terror that I felt last night when we learned that Fionn might have chicken pox.  It clawed at my heart and made me feel as desperate as a caged animal.  I think being away from Fionn (more on that in a bit) only intensified the feeling of anxiety.  Last night as I waited to get information from Conor who was at the hospital with Fionn, I ran through every single worst case scenario in my head and then desperately tried to shake those thoughts out of my head as soon as they arrived.  Horrifying, terrible thoughts.

Let me back up for a second.  I should first tell you that, in the the world of the immune-suppressed, chicken pox is a huge deal.  It can have a devastating outcome if the body can't fight back.  In fact, it is the only virus that they ask about every single time you check into the clinic.  Have you come in contact with anyone who has chicken pox?  The answer is always no, no, no.  I mean, who really gets chicken pox anymore?  Isn't there a vaccine for that?

The answer is that yes, there is, of course.  However, the second dose of this vaccine is given at the 4-year-old well visit.  A visit that our boy never got to have.

Still, it wasn't something that we spent a lot of time worrying about.  When Fionn got a fever last Thursday and went to the ER, there was no presence of spots.  When we returned to the clinic last Friday afternoon, there was no presence of spots.  He got a clean report from the nurse-practitioner, and we were cleared to go on vacation. 

That night we noticed a bump on Fionn's head.  It kind of looked like a pimple.  But it didn't seem to bother him at all, so we didn't worry about it.  By the time we arrived to the rental house on Saturday, there were a few more bumps on his head and a couple on his back.  In hindsight, I wish we had worried more about the fact that these bumps were multiplying.  But again, they weren't bothering Fionn.  He wasn't scratching them.  They looked like bug bites.

Sunday was a great day for the most part.  Fionn seemed to feel good, although he took a nap willingly for 3 hours which should have been a huge red flag for us.  His appetite was low, and he had diarrhea too which were worrisome.  But again, all of these things are normal when fighting off a virus which we already knew that he was doing.

Hindsight, hindsight.

That said, given all these symptoms, we decided to call the clinic the following morning as soon as they opened.  And we did.  We sent a picture of the spots to the doctors at 8 am.  The clinic did not seem concerned about them.  Of course, at this point, the spots all looked like bug bites with the exception of one pimply-looking one on the top of his head.  They thought it was a viral rash or bug bites.  We were told to monitor his temperature though because at this point, any fever he got would be viewed as a "new fever."  Last Friday's antibiotic and checkup no longer applied.

Fionn's energy was low and appetite non-existent on Monday morning.  He was crabby.  He took another unsolicited nap around 1 pm and awoke with a fever of 101.3.  The closest large hospital is Children's in Charlottesville, VA which is 2 hours away.  So Conor and Fionn headed there around 4 pm yesterday.  I stayed back with Dex.  

This all brings me to where we are now.  We just learned this morning that Fionn tested positive for chicken pox.  He will require an IV-antibiotic called acyclovir and is on contact isolation at the HEMOC Floor at Children's in Charlottesville.  We are still gathering facts, but it sounds like he will be inpatient for 7-10 days while we wait for the virus to pass.  We have explored the possibility of getting back to DC somehow for some of this inpatient stay, but we have not gotten a clear answer as to whether or not this would be possible.

 

Another logistical headache is that I am currently stranded at the rental house in the mountains with no car or car seat.  Seriously, there are no neighbors in sight.  This is a gloriously peaceful thing until you have a medical emergency with your immune-suppressed child.  Anyway, we have a car service coming to get me and Deaglan in just a few hours.  I'm waiting for him to wake up from a nap, break down the pack-n-play, and then we'll pretty much be all ready to roll.

We don't know much more than that right now.  I'll update again when we have a better idea of what the heck is going on.  Thanks as always for your support and prayers and offers to help.  We might need it once we have a better idea of what lies ahead.