RSV and Christmas Don't Mix

Owen started out the holiday season with Thanksgiving on such a high, we had nowhere to go but down.  He was so happy that day, alert and calm, satisfied in someone's arms or by himself in an chair.  It filled me with such happiness to get to have another year of holiday memories with my guy.  Then December hit and things started to slide in the wrong direction.  By the time we got to the week before Christmas, Owen was sleeping the entire day away and causing lots of concern for his mom and dad.  Then he started to get a temp which lasted a few days, and he wasn't going potty or eating (those go hand in hand, but alarming when we are talking about 26 hours with a dry diaper).   On Christmas Eve, I brought Owen into the pediatrician.

After an exam and test we learned he had RSV.  The doctor wanted Owen brought down to Boston immediately to be admitted.  With heavy hearts, Pete and I packed up our bags and made plans for Ellie to be picked up by family to attend the parties we would be missing.  On the drive down, I prayed over and over that somehow Karen would be able to work her magic and keep him out of the hospital.  Owen's oxygen levels were low and he clearly looked like he wasn't feeling good, but he didn't look like he was struggling to breathe any more then he usually does.

Our time in the ER was spent with the doctors and Karen.  She did work her magic- really she is a bit of a rock star and I am not sure how we managed to get her on our team- we are very lucky.  There is no doubt he would have been admitted if she wasn't there to assure the ER doctors what he would be okay.  It was a bit of a risk and I am sure the fact that it was Christmas Eve played a role in deciding to send him home.  We also felt he was on about day five of the illness so most likely the worst part was over.  We were under strict instructions to bring him back if he got worse, but otherwise after some oxygen and Albuterol treatments we got to bring Owen back home with us.

The positive is we didn't have to spend Christmas in the hospital with Owen.  The negative is we didn't get to spend Christmas with Owen.  He was too sick and contagious to bring to the family parties.  Pete, Ellie, and I went to three parties on our own while Owen stayed home with my mom (who was also sick).  I felt a bit like I was experiencing a preview of Christmas Future.  Ellie provided joy, hilarity, and distraction, but there was a gaping hole wherever we went.  I wanted Owen with us.  While going through the motions, a portion of my brain was worrying and praying for Owen.  Was he getting better or worse? When you have a medically fragile child with a life limiting diagnosis it is impossible to not panic each time they get ill.  Will this be the beginning of the end?  Is he going to pull through? So far, Owen has been sick many times and he always pulls through.  But one day he isn't going to.

The other day I read a comment by, no doubt, a very wise Facebook user.  They said, "Given the opportunity to walk in another's shoes, most people will still gladly choose their own." That has been rolling through my head over the past few days.  All around me I have seen, first hand or through pictures, happy healthy children and their parents spending time together creating happy memories.  When I stop to take a moment to wallow in the disappointment I feel about not having Owen with us this Christmas, I can't help but think of some of the other families who are experiencing a far greater sadness then I am right now.  Owen was home sick, I missed him, but his sweet little body was was waiting for me when we arrived home.  I can hear him snoring in the next room as I type this blog post.  I can think of a lot of people who aren't quite as fortunate as I am right now.

Here is to next year and all the bonus days I will get to spend with Owen in 2013!

Owen and his gal Barbie (courtesy of Ellie)

A Christmas Angel

PS- his oxygen levels are back up.  The breathing is still a struggle and he is still clearly sick, but I believe we have avoided the dreaded hospital for the near future.

MRI Number Four

Yesterday was Owen's MRI appointment in Boston.  The plan was the same as his past MRI's.  He would head to the PICU for Propofol sedation administered by Karen and Alice, once sedated they would perform the MRI, and then there were a couple of pokes and punches to be done for testing.  Unfortunately, we were unable to complete the MRI yesterday.

Owen has started to have trouble maintaining his airway.  If you listen to him breathe, it sounds like his chest is very congested and he needs to just clear his throat.  The noise is actually caused by lack of muscle tone in his soft palate.  For now, he is able to maintain good oxygen levels, but what this means for his future is a little murky.  Once Owen was sedated, the trouble he has with his airway became exacerbated and he needed support to breathe.  If this were a different procedure, like a CT Scan, where Karen could be next to him and help him, it would not have been a problem.  Unfortunately, Karen has to manage Owen from afar when he is in the MRI machine.  It just wouldn't work.

Our option now for an MRI is for him to undergo general anesthesia.  There will be some discussion with Owen's team and the anesthesiologist about this, but we are probably going to wait.  Owen did give us some blood and urine while sedated and we also did another skin biopsy.  Pete and I gave blood yesterday and the WES genetic testing has been sent out.  At this point, I think we will probably wait for those results and then make a decision about another MRI under general anesthesia.

We are disappointed.  We are concerned about what the airway issue means in the large picture.  It is a setback, but we still have our sweet, beautiful boy home with us.