Update on Benja’s medical “stuff”

Whew – we had a DAY today!

We left town early to get to the children’s hospital to do more of Benja’s medical evaluations.

First thing first was an upper GI.  Keith got up extra early so he could give Benja an early breakfast, as he wasn’t allowed to eat for four hours before the test. Benja smiled and laughed all through the test and (of course) charmed all of the folks in the room.   We got the news that all looked good and his insides look normal.

We were then off to meet with a new clinic called  the Complex Health Care team.  This new clinic was designed specifically to work with kids with multiple special needs that need to see multiple specialties.  They were amazing!  I am so grateful we got put in touch with these folks.   They were so kind and truly seemed interested in Benja and spent the morning and much of the afternoon talking to us, working to find him appropriate services/equipment, setting up appointments, answering questions, etc.   Just kind, helpful people, all of them.   In addition to the doctors and nurses, we met with the social worker for the clinic who is helping us connect with our local home health agency who will be delivering supplies for the children as well as the nutritionist who is helping us figure out how to help Benja get the proper nutrition.  We left with a prescription for Pediasure Enteral which we plan for him to be on indefinitely until he can get enough nutrition orally.

After the upper GI came back as normal the Complex Healthcare team was able to get the GI surgeon to squeeze us in for an evaluation.  We ran upstairs and had a consult with the surgeon to determine if Benja could get a G-tube.  The surgeon decided that yes, Benja was a candidate for a g-tube and we were put on the schedule for surgery next week!  There are still a few concerns/unanswered questions before his first surgery.  The first being his heart – he will go to be evaluated by the cardiologist on Monday to make sure his heart will be OK for surgery.  The second is his jaw and how they will handle the anesthesia.   As time goes on we are realizing that Benja doesn’t simple not want to open his mouth, he really isn’t able to.   One of the doctors today worked pretty hard trying to get his jaws to open enough to look inside when we all realized it was causing him a lot of pain and wasn’t going to happen.   So dealing with anesthesia might be more complicated than it normally would.  They believe that the anesthesiologist will be able to figure it out though and that it shouldn’t cause a delay in the G-tube, as long as the cardiologist gives the OK.

After the consult with the surgeon we headed back downstairs to complex healthcare.  We were able to discuss and get a demonstration on the g-tube, get some more tape and syringes for the NG tube he currently has and to received several more appointments with other specialists.

He will be seeing the craniofacial surgeon in early November as well as the neurologist in December.  We’re trying to get neurology moved up to earlier though.  Benja is displaying what the doctor seemed to think is a neurological tic in addition to his microcephaly/suspected craniosynostosis and its something I’d rather get checked out sooner than later.  The doctor started throwing out words like “brain not growing” and freaking me out but he assured me that while a small brain isn’t good, that function is more important than size.  Benja is significantly developmentally delayed but he is certainly making progress and catching up, so that is what we are focusing on right now until we get more answers.

Today as I sat and watched the doctors evaluate Benja I was just blown away that this is the baby that I met 16 months ago, the baby that we prayed and fought for is actually here and getting the medical care we were so desperate for him to have.

This sweet baby and his whole story is such a miracle.  It’s a miracle he’s even alive right now – that he survived those first two months before he came to the orphanage, that he didn’t die his first year with so many medical problems – so many people didn’t think he would make it – that he was even able to be adopted at all and that he is here now and a part of our family.  Such a miracle this boy.  I know he is going to just blow us all away with the progress he’s going to make.

Some of my favorite “baby” pictures of Benja!

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3 Comments to “Update on Benja’s medical “stuff””

  1. He is so precious! Praying for all of you!

  2. Dear Heavenly Father guide the doctors hands and open their hearts for this family. This beautiful baby is so worth it Salem!
    God Bless,
    Rose Anne

  3. So happy he is getting the care he needs!

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