Monday, January 8, 2018

Where We've Been

Happy New Year from Hazel


If you don't know me outside of this blog, I'm a nerd in a handful of ways.  Not like the good kind that is ultra smart or can help you with your math homework...more like Dad jokes, discovery channel and Microsoft Excel.  Over the Christmas break, I went back through the 58 posts from The Hazel Report and recorded all of her medical history where emergency care or anesthetic was involved.  Even with a period from January to November 2016 where I was too tired of all this to blog, the numbers are pretty staggering:


Service TypeCount
Ear Surgery1
ER1
EUA7
Eye Surgery17
Head Surgery1
Tooth Surgery1
MRI4
Total32

17 Eye Surgeries, 7 Exams Under Anesthesia and 8 other major medical events.  I wish I was here to report that this is a finalized list but alas....it's not.

Aubree and I try not to focus on where we have been but always looking towards where we are going with Hazel's health.  The critical time in a child's life for someone who has eye issues like our girl is really between birth and age 10 or so?  The question mark is because it's just an educated guess when you are dealing with something so rare.  This is the time where the eye develops, where the body adjusts and where investments (surgeries) can pay dividends (eye sight) later.  This is a fragile time of life for us.


Just after Thanksgiving this year, Hazel had a surgery on her right eye to do a number of things but one result of the surgery was to reattach a partially detached retina.  The purpose of the retina is to receive light that the lens has focused, convert the light into signals, and send these signals on to the brain for visual recognition.  No retina...no sight.  Last week when we got home from a visit to see family for New Years, we patched Hazel's good eye and it was really clear to us that nothing was coming through.  She couldn't find our Christmas tree in the room...she was feeling around for tables and walls...we would ask her to identify things and she would just reply "no thanks".  


A day later Aubree took her to get a sonogram of her eye and our worst fears materialized for the first time.  The retina is fully detached.  Somehow Aubree was able to keep it together and go back to the work for the afternoon.  I spent the first 15 or so minutes of my lunch break sitting in the parking garage at work wondering how long I should wait to make it look like I haven't been bawling. 

We've been through a lot and we know how to stay balanced and focused with our decisions and what the road map looks like to give Hazel the best treatment.  We weigh risks, we do our homework, we talk to all the people that we can to do our job as Hazel's parents.  But there's not a great way to spin this or to see the glass as half full.  No, this is not us giving up....it's just..........the prognosis for kids like Hazel who have a fully detached retina is not good.  Losing sight in that eye is now very real.  Right now Aubree and I are hurting, doubting and (speaking for myself) feeling depressed.  Despite how we feel, the morale in our house is still pretty good because the person who should be complaining the most doesn't complain at all.  Hazel is happy, her laughter and joy are infectious...it's hard not to feel the same way as her when she puts a big smile on her face.

There is a lot more I could say but I don't think tonight is the night.  For now, I wanted everyone to know that we have surgery scheduled for Thursday, January 11 to attempt to reattach the retina.  We will take it one step at a time from there -- more to come later in the week.

4 comments:

  1. Praying for Hazel, your family, Dr. Spencer, and all the other medical staff who will be caring for Hazel today.

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  2. Praying for Hazel, your family, Dr. Spencer, and all the other medical staff who will be caring for Hazel today.

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  3. We love y'all and are praying for that precious girl.

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