The Truth of the Matter

‎”God never hurries. There are no deadlines against which he must work.

Only to know this is to quiet our spirits & relax our nerves.” -Tozer

The truth of the matter is I wrote the last post wholeheartedly believing I could end all of this…

The truth of the matter is we got passed off to a GI specialist because of his lactose intolerance but figured that out on our own before our appointment with him…so by the time we saw him, Caleb was well in those areas…we decided to decline his medical work-up simply because we were very reluctant to have him “go under” when we are not sure what is wrong with him. If  Caleb does have any GI issues-they are not causing the things we do know about Caleb right now and don’t feel the need to “dig” more.

The truth of the matter is-the two doctors we have been dealing with (pediatrician and GI) were calling Caleb a “head scratcher” and, because of that, they were passing off his symptoms by explaining them away individually-instead of seeing Caleb as a whole. But…THEY are the doctors so if they say all of this is no big deal or, in their words…”neo natal hepatitis” (translation: elevated liver enzymes and we don’t know why) and “benign neutropenia” (translation: low neutrophyls and we don’t know why) and “suspected metabolic condition” (translation: organic acids found in urine and we don’t know why) and his Acute Life Threatening Episodes were being chalked up to a virus that he didn’t have…He lost a 1/2 pound at his most recent visit and his doctor said “but he’s not lethargic.” but they are the doctors…I am just the mamma (with a laptop and Google 😉 hahaha)…what do I know…

and when I felt like Caleb was being dismissed I started questioning my own sanity and felt like I was trying to convince doctors that there is something wrong.

Wait….truth…

the truth of the matter is it got to the point where I found myself almost wanting there to be something wrong so I could prove to them that I wasn’t crazy.  That. is. not. where. I. want. to. be. so I just had to take their answers and walk away. Stop everything….stop the search for an answer and rest and wait for Caleb to show something more.

First step: I decided to switch pediatricians…for many, many reasons. ’nuff said. and one came highly recommended from the God-loving neonatologist that oversaw Caleb when he was born.

However-his old pediatrician had already set up an appointment for us with an Immunologist to explain his “neonatal hepatitis” (translation: here, you deal with her!) and I figured I would go to see if she had any other insight.

However, the night I made this decision to switch pediatricians…I got a call from his old one saying that there was a level found in his recent lab work that indicates muscle damage/deterioration/break down.  Muscle damage can cause elevated “liver” enzymes….although those enzymes aren’t coming from liver damage at all!  They are coming from muscle damage….it’s just that they are more commonly caused by liver damage so docs pursue that until they keep coming back empty (translation: scratching their heads) and then run this other test…which is exactly what happened.

So now they can run a test which shows if the damage is coming from his heart, skeletal or brain muscle and we’ll have better direction.

The Immunologist was amazing and saw Caleb as a whole and knew immediately something was wrong and she said music to my ears…”even if this metabolic condition is mild now…let’s figure out what it is so we can intervene before any more damage is done!”.  HELLO!  That. is. all. I. wanted. to. hear. She was awesome.

Then we went to his new pediatrician and he immediately said you WILL be seeing a metabolic doctor!  Thank you!!

I have learned so much in all of this already…but there are couple of things that I NEED to remember…

There are a gazilion metabolic disorders (some more common than others and some more severe than others) and there are other conditions that affect metabolism so this. is. going. to. take. time.

This has been a long year for the Bucks. It was a year ago that they told us Caleb had markers for Trisomy 18 and were sending us to genetic counseling….so I have learned that bad sounding stuff can turn out to be nothing, too.  (you can click on that link to read that story if you missed it).

It’s just, as a mamma, if there is anything we can do to figure out what it is so that if there is anything we can do…then I want to! and if everything adds up to nothing, as it has with all of his markers for Trisomy 18, then I will be ever so grateful!  But I would rather be wrong and know it and have the privilege of humbly admitting it (how great to be able to declare he is healthy!) then be right and not know it.  I need to be at a place where I can be his mamma and the doc can be his doc and now that we are in good hands…I feel permission to do that.

I also need to remember what I held so close in the past…

It is the LORD who goes before you.

I also HAVE to remember that all of Caleb’s days are written.  The things I don’t know…God does.  The things that surprise me…do NOT surprise God. And among infinite things He is The Healer. And hopefully….hopefully…it turns out to just be my sanity he needs to heal 😉

love you!

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One Comment on “The Truth of the Matter”

  1. Heidi Hollenbach says:

    Thanks for the update, Rechel! We are keeping your whole family, and especially you and Caleb in our daily prayers. SO glad you found a pediatrician and a specialist who-hopefully- will continue to be your advocates! I am SO, SO sorry that little Caleb is suffering and that this is all still a mystery. I am praying for very clear answers for you, and soon, so that you can help Caleb get the care he needs to heal and stay healthy. Give that little guy an extra cuddle from me….sure wish I could hold him for you!! Love, Heidi


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