balancing acts

Caelan is still having some difficulty breathing when he gets upset.  The more he gets worked up the harder he has to work to breath.  It's not easy to see, especially when we expected to come away from this surgery without any breathing concerns.  Apparently it's normal for Caelan to have an adjustment period to get used to this new method of breathing.  I think we've gone a step past normal though.  Tomorrow they'll be doing what they call a soft scope.  It's similar to a bronchoscopy but it's a flexible camera that's inserted down his nasal passage.  (It's about the size of a piece of spaghetti.)  Not pleasant.  They're hoping to determine if there's any scar tissue that's narrowed Caelan's upper airway and would explain the difficulty he's been having.

It's all just such a balancing act.  We really don't know what's what!?  Is he overly sedated?  Are these symptoms of withdrawal?  Is he in pain or discomfort?  Does he need to have secretions suctioned?  Trying to balance out medications to ensure that he's alert enough to grasp this whole new way of breathing and learn how to cough and clear his secretions in a new way (not out of a trach), but at the same time keeping him calm and comfortable.  The more he cries, the more secretions he makes, the more suctioning he needs, the more he gets worked up, the harder it is for him to catch his breath.  It's a vicious cycle.  When he cries, is it because he's uncomfortable? in pain? scared? withdrawal-ing?  I love how the hospital staff looks at us and asks our opinion and we haven't got a clue.  Seriously I am glad they ask us since we like to have a say in our son's care, but at the same time when you don't know, you really wish someone else could tell you what the right answer is!  The only person who can do that is Caelan and he doesn't seem to want to part with that information.

A urine sample that they took last week grew some bacteria.  They've taken another sample by catheter to confirm the results but in the mean time Caelan's on antibiotics for a suspected urinary tract infection.  This is despite not having any other symptoms than the fever that he had that first week post op and a very slightly elevated white blood cell count one day.

What else can I update on... Still no IV, which means no big bloodwork. 

Oh, we've taken another step in the right direction changing Caelan's bi-pap to c-pap.  It's a different method of helping Caelan with his breathing.  He isn't getting any oxygen support - except post suctioning to help him recover faster.  He's on what's considered room air.  We were hoping to be able to give him some time off on his own but we're not quite there yet.

We tried to increase the rate of his feed again yesterday.  The dietician felt confident that he'd handle jumping from 45 ml/hour to 70 ml/hour.  I bumped him back to 55ml/hour in the middle of the night when he started crying out in his sleep.  I really think this breathing thing should be our focus right now, not a feeding schedule similar to what we previously had at home.  We can figure that out later - not my priority or concern at the moment.  Today it was agreed that we'd try him at 60 ml/hour.  Slow and steady.

After what we felt was a rather traumatic weekend I'm happy to say that we feel we're at least looking in the right direction.  After many sleepless nights at the hospital, Damian and I are back into our passing ships routine, trading off nights with Caelan at CHEO or at home with the girls.