Wednesday, July 10, 2013

Dominic Update- Yeah for breathing!

Because we have had a night nurse almost the whole time we have been home from the hospital after Dominic received his trach and vent, I have not had too many nights sleeping next to him.  You would think a baby with a trach would be quiet through the night but I have learned what he lacks in vocalizations, he makes up in beeps.  My little man beeps all night long.  High heart rate, low oxygen, apnea, too fast breathing, too slow breathing, apnea, leads off.  This monitor here in the hospital is loud too... like waking up to a fire alarm a couple of times every hour!  But, with all that being said, I'm happy.  I'm happy to sleep in the same room as my little man, to see his little feet with one sock on and one sock off rest on top of the bed rail.  I'm happy to hear him squirm and get mad at me when I touch him.  We're still not sure if his problems are genetic, but I can tell you one thing that IS genetic... his dislike of being touched when asleep.  Mike and I both don't play well with others when it's time to sleep... he inherited that from us!

Dominic has been off the vent since Sunday and has just been breathing like it's no big deal.  He has energey during the day which shows he is not too exhausted by the extra work of having to breathe on his own.  For the most part he has been able to maintain good oxygen levels (except last night he needed a little boost).  His good looks are enticing all passer-by's to coo and talk with him and all the nurses can't get over his bright white-blue eyes.

The plan so far is for him to have a bronchoscopy tomorrow where they run a tiny camera down his airway to check the progress of his trachea then on the 18th have eye surgery to correct his ptosis (droopy right eyelid), a MRI, an ABR (sedated hearing test), and nerve conduction velocity test.  This last test is to check how his brain receives signals from his nerves.  They will place electrical impulses on his feet (while he is sedated) and record what his brain does with those impulses (I think...).  This test is because he has hereditary spastic paraplegia (a genetic condition) that often results in the complete non-use of ones legs eventually). 

Anywho, there you go.  I've got a handsome boy, a happy man, an independent breather.  I'm one lucky momma. :)

In  and FOR Them!

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