It’s been a long time since our last update.  There have been a few important milestones, two very recently, that are definitely worth sharing.  

1. Last October we were finally able to make it to Opthamology to test Lucas’ vision.  We’ve known since Lucas’ cardiac arrest that his brain was severely damaged when it did not receive oxygenated blood during an hour of CPR.  We still don’t know exactly which areas were damaged the most because Lucas’ pacemaker prevents him from being able to get an MRI.  The intent of the Opthamology testing was to determine if the parts of the brain involved with vision were damaged during his cardiac arrest.  Unfortunately, Lucas wasn’t able to complete any of the tests, and it was determined that Lucas is cortically blind.  This means that while his eyes are healthy and normal, his brain damage has left him functionally unable to see.  Even before the tests, we thought that Lucas’ vision was very very poor, at best so we weren’t surprised by the results  We had hoped the tests would help us understand his world better.  We got a few answers but not nearly as many as we’d hoped.

2.  As we neared the end of 2023 Lucas’ pacemaker was nearing the end of its life and we needed to start planning for pacemaker replacement.  We met with Lucas’ electro-physiology doctor who told us something very surprising.  He told us that he was amazed that Lucas’ pacemaker leads still had so much slack wire.  When the leads are installed they add a coil of extra wire so that as you grow, there is extra wire to stretch out.  He told us he was shocked that Lucas had not outgrown his leads, especially since they were not installed with the intent that Lucas would need them for very long.  We couldn’t believe it.  We always felt in our heart of hearts that Lucas was discharged so he could die at home.  Four and a half years later, this was the first time anyone had actually said it.

3.  At the beginning of this year, Lucas got a new wheelchair.  We still carry Lucas 95% of the time we take him anywhere but he is getting bigger and harder to manage.  His new chair supports him well and he is able to be comfortable in it for short periods of time.  This is a positive step towards transitioning him to a wheelchair when the day comes that we can’t carry him all the time.

4.  We met with a new developmental neurology doctor in February.  She was, by far, the most helpful neurologist we have worked with.  First, she told us that she spent a long time reading Lucas’ history before our appointment and after meeting him she said “he was not at all what I expected”.  She was in awe of his joy and his ability to interact.  That was such a great recalibration for how much we have to be grateful for.  Secondly, she affirmed what we believed about Lucas’ startle last year.  Lucas started that horrible startle immediately after he started using Baclofen.  It stuck with him for seven months until we got a prescription for Clonazepam for totally separate reasons.  It ended up controlling his startle and allowed him to return to his normal self.  We believed that the Baclofen caused the startle, and our new doctor confirmed that as a possibility and promised to get us more info.

5.  Two weeks ago we took Lucas to Children’s for pacemaker replacement surgery.  The surgery went well, however not all of the settings on the new device were configured correctly and so Lucas came out of surgery with a poorly performing pace maker.  Our EP doc came and made some adjustments and was happy with the updated settings.  Unfortunately, the change of conditions meant he wanted Lucas to stay the night that way they could watch on monitors to make sure his function was good.  We spent the night in the CICU and got to go home the next day.

6.  Last week, Lucas’ nurse for the last 4 years told us it was time for her to move on.  As I said before, Lucas is getting bigger and physically harder to manage and she thought it was not going to be safe for her to lug him around much longer.  She has been an absolute rock for our family.  She has loved Lucas, believed whole heartedly in his potential, done everything she could to give him normal experiences that help him develop, worked her butt off to give us some semblance of normalcy when she is here and has loved all of our other kids too.  She’s been in our home and a part of our family for four years.  She’s the only nurse that has stuck around and we are incredibly grateful that she has persevered with us through some hard things.  She has been a remarkable gift to us and we are going to miss her.

We appreciate that you continue to pray for Lucas.  The five year anniversary of his initial heart surgery was last week.  It’s taken five years but we are truly starting to understand the miracles that Lucas lives every day.  It might not look like the biblical miracles (yet) of healing the blind, or curing the lame, but it’s not an exaggeration at all to say that he has defied all odds.  

We’ve all changed a lot in those 5 years, and slowly, very slowly God continues to guide us forward.

After all, 

The answer is in a story

and the story is still being told.