Monday, May 5, 2014

No Answers Yet

I'd like to start this post with a heartfelt thank you to all who have been praying for our family and for the sweet comments I've received on the last few blog posts.  I don't have time to reply to each and every one of you right now, but just know that I deeply appreciate your prayers, advice, and encouragement.

I'm home for the first time since last Thursday night and Hubby is up at the hospital with Little Dude.  I'm looking forward to getting a good night's sleep so I can be refreshed to go back to the hospital early tomorrow morning.

Hanging out in the swing at the hospital

Hubby's sister is a doctor and is home for her vacation this week.  The timing could not have been better as she's been spending a lot of time at the hospital with me, helping me give the doctors the information they need and coming up with questions that I need to ask.  Since I'm not a medical professional, it's extremely helpful to have someone around who know what to do in a situation like this.

Little Dude's GI study showed no abnormalities and the ENT consult didn't show anything wrong either.  Two geneticists are consulting on his case now and will be doing tests to check for a genetic syndrome.  Based on the list we've put together of Little Dude's unusual characteristics and personality, they're fairly certain that they will find something.  They're doing blood tests, a urine test, and an ultrasound of his internal organs.   

Sleeping at last!

Here's an overview of his symptoms and characteristics:
  • Problems eating and a disinterest in food.
  • Dry skin-this runs in our family, but we're still adding it to the list just in case since his is more severe and widespread over his body than the other kids' have ever been.
  • Slightly inset wide-spread eyes that have an almond shape.
  • Ears that are low-set, rotated slightly, and bigger than average.
  • A high arch palate-basically the roof in his mouth is abnormally high.
  • An improper suck while feeding.
  • Hypersensitivity-the slightest touch or movement often sets off a massive crying fit.
  • Arching of the back and neck-Little Dude usually has his back arched and his neck extended in what looks like a very uncomfortable position.
  • A hoarse, often high-pitched cry.
  • Being extremely hard to calm down and keep calmed down.
  • Heart murmur.
  • Not meeting developmental milestones-he doesn't smile, laugh, track things with his eyes, put his hands in his mouth, wave his arms and kick when awake (unless he's crying about something), or coo.
On Friday night, Little Dude got an Ng tube put in which, while somewhat scary to me, was also a huge relief because we can finally be sure that he is getting enough to eat.  At each feeding (which is every 3 hours around the clock), we start by offering him a bottle.  Every once in a while, he takes it well, but usually we end up doing most of the feeding via the feeding tube.  While the feeding tube is a good thing right now, it's also the equivalent of putting a band-aid on the real problem.  But the doctors are working hard to come up with a diagnosis for him and then we can determine what the next step will be.  I've come to terms with the fact that we've ruled out all the "quick fixes" for Little Dude's eating problem and this is going to be something he will struggle with for some time.  We don't know if he'll do better when he starts eating solids, but as he'll still need a bottle for the next 10 months or so, we definitely need to come up with a solution in the meantime.  


3 comments:

  1. Thoughts and prayers are with you, your family, Little Dude and the doctors as you try and get things figured out. Hopefully you'll have some answers soon!

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  2. Praying for you! Praying you get some answers and feel the peace of God while you wait.

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  3. Oh my goodness! I am sooo praying for answers!!

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