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December 2, 2017 – Papa writes ….

First off, we need to apologize for not getting a post out last night with yesterday’s results / observations, sorry!  It was Cheryl’s birthday and we had both Gavin and Chloe with us, and well, life kinda got in the way …..

Yes, I said Cheryl, as this is Dean, aka Papa, as I am typing an update as we drive to Knoxville for a bit of an escape, as I had bought Cheryl tickets a few months ago for her birthday to see Chris Tomlin’s Christmas show tonight, having no idea what this past week’s events would include.  So with the help of Nicole, and some REALLY great friends of hers, we lined up a fun day for Gavin at his friend’s house, and a fun day for Chloe at her friend’s house today.

So, since I have the “pen” so to speak, and your attention, I would like to THANK everyone for following us along on our unexpected journey, your thoughts and prayers for Miss JoJo and all of us, and your donations to the GoFundMe campaign to help Nicole and Brandon with their lost wages!  You will never know how touching it has been to me!  THANK YOU, from the bottom of my heart!

I would also like to THANK those who have said how brave we have been on this journey, how we have been living out our faith and trust in God, how we are inspiring and encouraging others, etc.  While these are all nice things to hear,  I would be quick to say that just about everyone would be doing the same if they were walking in our shoes, as we really do not have much of a choice given the situation.

But more importantly, I would tell you we take no credit for such things, as it is all because of our Faith and Trust in Him, the One who ultimately comforts us, protects us, cares for us, and LOVES us.  Yes, I am speaking about our God, the Great I AM, our Rock, our Redeemer, Our Savior.  The King of kings, and Lord of lords.

Yesterday was not a “fun” day like one would hope for their spouse’s birthday, as we are 4-1/2 hours away from where JoJo, Nicole, and Brandon are at UNC Chapel Hill Children’s Hospital, and well it’s always kind of scary when anyone has to go under general anesthesia, let alone a five month old.  They are times when you just want to be there in person, not that we can necessarily do anything to improve or help things, but it would have been good to be there to offer support and just “be there”.  But, the other two grands need as much of a “normal” life as we can offer them too, so home we stayed.

I will spare you the pictures of when JoJo was just waking up and was miserable, just like the last time she came off anesthesia.  Needless to say they were heart breaking to see her suffering.

It does help knowing they are in very capable hands there, and knowing that getting second opinions is always good.  Don’t get me wrong, JoJo has some high quality Doctors in Asheville already, some of whom even trained at UNC Chapel Hill, but it is reassuring to get someone else to have a look and verify things.

Brandon has sent his Doctor notes as always (listed below), but the laymen’s report is that the ENT scoped her yesterday to see if he could find anything that might have been “hiding” or different from her last scope six weeks ago.  This was followed by the Pulmonary Doctor having a look at her lungs to make sure there were no secretions or junk growing in her lungs that should not be there.

We were all partly hoping everything was just fine “as-is”, but mostly hoping they could find something they could “fix” to help with her continued aspiration and breathing difficulties.

The ENT basically reported that the “gel” procedure she had six weeks ago to fill in a depression near her vocal box looked really good, but she is still a bit swollen from that, that her airway is narrower than “normal”, that he did not find a tracheoesophageal fistula or anything he could “fix”, and that he thinks she will develop a stronger airway as she grows older, hopefully eliminating her need for supplemental oxygen.

Not exactly the news we wanted for the side of us hoping for something to “fix”, but actually really good news for the side of us that hoped everything was fine “as-is”.  So, mixed feeling to say the least, as we would love to see her not have to struggle with her breathing.

She will probably be there a minimum of a few more days, unless they decide to do more tests or procedures while she is there.  We shall wait and see, but hope they can come home and get back to a bit more “normal” life with the other two kids.

Today I am THANKFUL that JoJo is recovering from being under anesthesia and having the scoping procedure!

Today I am THANKFUL for the quality care JoJo is receiving at UNC Chapel Hill Children’s Hospital!

Today I am THANKFUL for the confirmation that her Doctors in Asheville have done a great job!

Today I am THANKFUL for friends to help out with the other two grand kids so we could escape for a bit!

Today I am THANKFUL to spend a day celebrating Cheryl, my soul mate, my love, and my best friend!

Today I am THANKFUL for some really great friends along life’s journey (some removed by miles and years of separation), our past and present church family, and our brothers and sisters in Christ who have been praying, asking what they can do, providing encouragement, providing financial support for Nicole and Brandon, helping take care of the kids and pets, and just being great people!

Doctor notes:

 Pyper UNC Chapel Hill Dr. Wade McClain Pediatric ENT Surgeon

  • Has Elliptical cricoid
  • Has strider breathing in… he thinks it’s from swelling
  • Her airway is borderline size 3 should be size 3.5 intubation
  • Thinks she will literally grow out of oxygen …. Her airway will get bigger and stiffer
  • Tough to view for intubation purposes… grade 2b view
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