Bewildered and Befuddled

Well, our boy remains a mystery. Not a good thing when you’re parents wanting answers for what’s up with your little honey boy. Mattie’s bronchoscopy really didn’t reveal anything significant enough to warrant the issues he is having. He did have some inflammation of the airway, but not severe. His breathing “spells” which involve a little gag/choke episode followed by a drop in his oxygen saturation, and obvious struggle in breathing, have increased.

Today an upper GI was done to see if there is a possibility that in spite of his fundoplication (stomach surgery), he may be refluxing still. The upper GI, did not reveal that, however it is still not out of the question that this is happening. It also appears that the fundoplication is still in tact and hasn’t loosened or come undone.

Leaving us with no real explanation at this point. We have a care conference scheduled with all of Mattie’s specialists on Monday, so that we can get everyone around a table and discuss this and come up with a plan. Mattie will also have a swallow study done on Monday.

We would appreciate continued prayers and really really hope that this coming week brings some answers and a plan for Mattie’s care.


8 thoughts on “Bewildered and Befuddled

  1. Praying for wisdom from on high for all of Mattie’s specialists and caregivers. May they be given dreams in the night, Holy Spirit impressions as they decide on the very best course of treatment for your precious boy. Kiss his sweet head for me! Also praying that his Mommy & Daddy’s strength will be renewed daily.

  2. PRAYING with you continuously……thanking God because He knitted Mattie together….and knows even when we don’t….PRAYING!!!!!

  3. Continuing to pray for your family and your precious new son as you try to get the answers you need for him and work toward all being home – together!

  4. Praying for your guy! Ok…ask if they’ve looked at cricopharyngeal achalasia. Although it’s EXTREMELY RARE, my daughter Angela has it, and it took us until she was 13 to get it diagnosed! We finally had to have esophageal motility testing done in order to figure it out. If he has that, he could be choking on his own secretions. I can’t tell you how many endoscopies Angela had done, and bronchs, and upper GI’s, and video swallow studies. YEARS worth of them. She had her nissen done at 11 months old, along with gtube, and all the jazz that goes with that stuff. Anyway, it’s just something to mention only because it’s probably not been checked out and…well…since you’re looking for a needle in a haystack, that might be a good needle to check out.

  5. Oh, and we finally got it diagnosed by doing esophageal motility testing with Dr. Sam Nurko at Boston Children’s. (we live in MN)

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