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Thursday, July 10, 2014

Long Overdue Update on Little Dude

So we've been busy....

We're up at Mayo 1-2 times a week right now for visits with different specialists, tests, etc.  When I'm home, I'm either holding Little Dude or running around like a madwoman trying to clean as much as I can before he wakes up again :) 

On July 3rd, Little Dude had a full day of appointments at the Mayo Clinic.  He had a fluoroscopy of his lungs, a blood draw, an appointment with the geneticist, and an appointment with pulmonology.  My sister-in-law (the doctor) came with and I was really glad she was there because she was able to help me figure out some of the information we came away with.  We were at the clinic for over 7 hours that day. 

The pulmonologist ordered the blood draw because Little Dude's lactic acid levels and eosinophils were really high while Little Dude was hospitalized back in May.  He was surprised that no one had bothered to re-check the levels.  He also diagnosed Little Dude with tracheomalacia which should have been picked up on earlier since Little Dude has had 2 fluoroscopies and 2 chest x-rays since 3 weeks of age.  The tracheomalacia causes breathing problems and noisy, rattley breathing.  When Little Dude cries, he often turns blue and has a harder time breathing thanks to the tracheomalacia so we try not to let him cry too much.

A friend of mine gave me this outfit for Little Dude.  She figured he should have an outfit with his blog name on it :)

Back when Little Dude first saw the geneticists while he was hospitalized in May, they said that they would run the chromosome test first and then if everything came back negative with that, move on to the longer, more difficult microarray blood test.  They said it would take about 2 months for the results of the second test and when they scheduled an appointment for him to be seen in July, I assumed that it was to see the results of it since the chromosome test was negative (as we suspected it would be).  So, I was pretty surprised when Little Dude was examined again at his appointment and then they asked if I wanted to run the second test.  Um, didn't we discuss this TWO months ago?!?!?  So now we have to wait another 10-12 weeks to find out if/what genetic syndrome he has.  They're specifically looking at Noonan Syndrome, Costello Syndrome, Williams Syndrome (one of my awesome readers actually emailed me about this one because she thought Little Dude sounded a lot like her son who has it), and Cardiofaciocutaneous Syndrome just to name a few.   
Little Dude tried out the jumper for the first time this week!

Today, Little Dude had a bronchoscopy, an esophageal study, another blood draw, and a urine sample.  The blood draw and urine sample were for the genetics testing because the paperwork wasn't done on that in time on July 3rd when we were at the clinic.  The other two tests showed that Little Dude has inflamed airways, but that he won't need surgery for the tracheomalacia as the pulmonologist suspected.  The pulmonologist instructed me to "spoil" Little Dude though so his breathing doesn't worsen.  Both the pulmonology and GI departments took biopsies which we will find out the results of next week.  We're specifically looking to see if Little Dude is aspirating reflux.  All the tests were done under anesthesia.  Little Dude did great although he had to be poked countless times to get an iv and for the blood draw.  Thank goodness he was asleep for that.  He's had a fever and wanted to sleep since then, but I think by tomorrow he'll be getting back to normal.

BTW, I finally caved and opened an Instagram account.  :)   You can find me here: http://instagram.com/supermommyornot       


  1. Little Dude looks like he is doing well. He is in the good hands of a great family, team of doctors, and he has some awesome siblings.

    1. Thank you! Yes, he definitely has a lot of people who care about him.


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