Oh this stuff… Health Update


Oh this is the stuff you told me about, the frustrating heath stuff that sometimes comes along with Down syndrome, this stuff, that for 6 months God so mercifully sent on a detour.  Maybe because he knew my strength and weaknesses, because he knew me so completely as a mom, and spared me 6 months. Maybe it was time to knock me off my tuffet into the world of a bunch of co-pays and doctor visits that left me with not much answers and pediatricians scratching their heads. Until now.

“this stuff”

So that upper respitoary coughing that has been going on since the beginning of July (typical Down Syndrome cough so says the pediatrician for over a month) has manifested itself into Bronchiolitis & bronchospasms. What happened according to his Pediatrician is that the excess “snot” that our little ones happen to produce dripped down to the back of his throat and he was unable to clear it properly due to his lower muscle tone.  Then his (out of nowhere) reflux that recently showed up started to irritate his bronchial tubes along with the “snot” leading to inflamtion and now bronchiolitis. I am terrible with medical terminology so bare with me.

His reflux has been so bad he was spitting up, sometimes projectile sometimes clumpy about 30 times a day. Leading to a 9oz. weight loss this last week. So we put him on baby Zantac yesterday. He wasn’t taking his Albuterol very well orally so we switched over to a nebulizer. I am new to this nebulizer thing, but as a mom, I HATE IT. I know a lot of kids have used it, maybe not a big deal for a lot of people, but for me … it makes my heart hurt.  He is also on prednisolone …a steriod to decrease the inflamation of the bronchial tubes.

at least he got a cool fish mask right?

We got a chest x-ray to check out his lungs for aspiration and heart for any possible abnormalities that perhaps we have missed in the past ( since Grady has had an increase in sweating) …Everything came back GOOD! Amen.

So here we are Saturday, Grady actually has been taking to the Zantac well and spitting up has decreased, but his  “Happy Hacking” I call because he smiles through it, is still there and going strong.  I am focusing on feeding to regain the weight lost and extra TLC.  Doctor didn’t want to see anymore weight loss otherwise we are looking at admittance as a possibility on Monday.

Thank you all who have been praying for our Little Grady. He is doing better, those who have spoken good upon him and healing. The prayers sent to me have encouraged and lifted me up. Because I won’t lie,  it hurts beyond measure to see my Grady struggle. Thank you again.

On a happier note here are some pictures from this morning. I LOVE MY SONS! Praise the Good Lord!

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8 thoughts on “Oh this stuff… Health Update

  1. Kayla says:

    Oh, I can relate to so much of this…the frustrating health stuff. I’m so glad Grady is feeling better, but I know it’s frustrating there are not definite answers. Austin was doing well too,but he’s started losing weight due to congestion and not being able to breathe. I feel like im in the “6 month storm” and I hope it ends soon. The breathing treatments aren’t fun. I’m so sorry your little guy has been having such a rough time. Thank God he’s doing better…I just pray his “happy hacking” goes away. Hang in there. I’ve been thinking about and praying for all of you.

  2. Pat Kobylensky says:

    I’m so sorry that our poor little guy is having all this trouble. We’ll be praying for his weight gain and complete recovery very soon! As far as the nebulizer, I’ve had many of the treatments myself and believe me, Grady is thanking you for them! It is so much easier to breathe after a treatment!
    So, let’s give God the glory and thanks for the treatments that are available. Bless you and Paul. May God continue to give you the strength to stay strong in His promises.

  3. aprilnarretto says:

    so sorry to hear about sweet Grady but our babies are much stronger than they are given credit for though. Yes, low muscle tone has a lot to do with EVERYTHING and unfortunately their respitory problems are no different. William was in and out of the hosp. multiple times with atelectisis (sp) He had a nebulizer for a year and a half but we did not use the mask. I fed him breakfast while he got treatments.You all are in my prayers, I know these times are difficult but He is always there for you.{{hugs}} april

  4. Melissa says:

    I’m glad to hear that his heart and lungs look good, but am sorry that you are dealing with health issues. The health issues have by far been my greatest struggle. We just started Claire on Zantac last night (which of course she hates!) but I hope they are both feeling better soon.

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