It’s been one of those weeks. Twists and turns that leave you feeling a little shell shocked or gut punched or both…but not completely ignorant that you are surrounded with blessing. 

I still haven’t packed and can’t seem to make myself do it, so while I procrastinate into the 11th hour, I might as well take the time to give you a just the facts ma’am summary of tomorrow’s events.

Tomorrow morning (Thursday 9/1) we report in at 7:20am for the second phase of DBS, Deep Brain Stimulation

The procedure is likely to take at least 3 hours. (Apologies in advance if this is TMI, but understanding this means spelling it out.) They will reopen the 2 lengthy sutures on the top of his head and then thread/tunnel wire beneath the skin – along the back of the head, neck and shoulders.  They will also install the 2 pacemakers/neurostimualtors/batteries in the subclavical space of his chest and connect the whole system. 

The major work in the brain, this unbelievable appliance, has been put in place.  Tomorrow our neurosurgeon plays electrician and carpenter, creating new spaces, laying wires and getting it all connected to the power source. 

This tunneling and the large incisions on his head and chest can certainly be painful, especially when you have a tense body that moves against your will….not to mention new equipment on the back of a head that you regularly thrust against a headrest (ouch!!!).

We’ve recently tried pain meds with some bad results, so along with success of the surgery and remaining infection free our prayer is for pain management, a tricky beast for many kids with Kernicterus who adversely react to most pain medication. 

It is uncertain when the DBS will be turned on, but we are praying that this will be sooner than later, as it may help with Blue’s tone and ability to recover from this surgery. 

Also, please keep this multidisciplinary surgical team at Childrens Mercy in your prayers. They are so incredibly talented.  We deeply depend upon and are so grateful for them!  

A fun little video of Blue talking about DBS last month. I ADORE his voice and his bravery!!! https://instagram.com/p/BH3ipLqABNs/

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