Friday, July 26, 2013

Dori's breathing difficulty

Dori's week started off this weekend with a stinky ear infection and a slight cough.  As the days have progressed he has gone from having a fever on and off, the ear infection is managed and nearly gone, to now these past couple of days he hasn't been able to maintain his oxygen levels on his own.

Through it all he has been chatty, happy and soulful.  When his pulse oximeter begins to sound off (little machine that alarms off when his oxygen level dips below normal)  -- instead of being annoyed or distracted with it, he just starts bobbing his head like it's music.  The first time he did it I thought it was a just a coincidence, but once he did it the 2nd time and smiled at me -- I couldn't help but laugh right along with him.

Since he is coughing quite a bit, we have intentionally kept him away from Wynnie.  Wynnie hasn't minded having quality time to himself with his toys on the floor while I hold Dori, but Dori on the other hand is very mindful of straining his neck asking for Wynnie until I'm able to adjust his body so that he can see him from where he's sitting with me.  Once he catches a glimpse of Wynnie he grins and all is well with the world again.  His love of family and of life gives us so many reasons to smile!

These past two days he's been on the nasal cannula breathing in oxygen to maintain his levels in the 90s. Without the cannula, he drops down to the 70s and 80s.  I cranked him all the way up to 4 liters of oxygen yesterday but was eventually able to titrate him down to 1 liter.  But once he woke up from his nap and was active again, he had to be cranked back up to 3 liters.  At this point the breathing treatments, steroids and antibiotic he has been prescribed aren't really helping him in the breathing department.

So as I write this drinking coffee -- my overnight bag is packed, Dori's diaper bag is loaded with supplies in the car, and another hospital trip is in our plans for the day.  We will be taking him to Plano Children's (not going all the way to downtown Childrens).  Please keep Dori in your prayers -- we need his little lungs to open up and allow him to breathe without the assistance of oxygen.
This is Dori at the pediatrician's office on Monday.  He had Dr Wardell laughing so hard that when we followed her out of the room, there was a cluster of nurses and office staff lined up watching us leave the room.  I guess we were a little loud.  It all started with telling her about his "closed eye driving" in his scooter (that he only does when his physical therapist is watching him -- he likes to make his PT nervous).  Then once Dori started his faux country club laugh, she really lost it.  I wish I would have recorded it... he was a riot. 

This is what Dori has looked like all week -- Mr Snuggle bug!  His hands are covered in socks to prevent him from yanking out the nasal cannula. Smiling as always...  

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