Saturday, August 28, 2010

1 Step Forward, 2 Steps Back

The past few nights have been filled with little sleep. Austin is very congested. However, nothing is really coming out of his nose. He literally sounds like a snorting pig. I know that’s not the nicest analogy, but it’s exactly what he sounds like. He’s been waking up numerous times during the night because he simply cannot breathe. Austin weighed 15 pounds at the Neurologist last week. However, he weighed a mere 14.6 pounds at his 6 month well child visit on Friday. So, I suppose I can take back what I said about him “doubling his weight.” :( He is actually 26 inches long. I knew he had lost some weight because his appetite has decreased dramatically due to not being able to breathe through his nose. My poor baby. We’re back on the breathing treatments and they seem to be breaking up the congestion.

Austin did not see his regular pediatrician for his 6 month well child visit because she’s on maternity leave. The doctor that’s filling in for her is very nice. However, she’s definitely not Dr. C and she doesn’t know Austin. I know it’s not her fault and she was very thorough. She said his weight has fallen off the chart a little, but she’s not “too concerned.” Hearing this from Dr. C would reassure me because she knows Austin, but this doctor doesn’t know Austin. Therefore, it’s hard for me to feel at ease.

Speaking of doctors, we saw the Kidney Doctor on Thursday. I really liked him and feel like we’re going in the right direction. Austin’s VCUG came back fine with no signs of reflux. Dr. Q (the Kidney doctor) said there’s a possibility that there’s an obstruction of the left kidney, which could be the culprit of the swelling. What’s the next step? They drew blood to measure the kidney function. The doctor also ordered a Nuclear Medicine Renal Scan with Lasix to rule out an obstruction. Unfortunately, Austin will have to be put under general anesthesia for this procedure. I’m thankful he won’t know what’s going on, but the thought of anesthesia is scary. I know children his age and even younger are put under anesthesia every day and do just fine. The procedure isn’t until September 7th and I just know I’ll be a nervous wreck!

I’m worried about my little man, but I have faith that everything will be okay. Please keep Austin in your prayers. I just want him to feel better and EAT like he normally does.


  1. I'm sorry Austin isn't feeling well, I always feel so sad for my boys when they are congested because there's just so little you can do to help them!
    I agree about not letting dr's or anyone for that matter putting limitations on our kids! Who's to say Austin won't sit in the next month or two, sure it could be six but why put a time line on it?! Sutter just turned seven months old and all of a sudden he is reaching, grabbing, pulling and playing with anything he can get his hands on and it literally happened over night!

    I'm sure he'll be back to his normal hungry self soon and will put those pounds right back on! Hang in there!!!

  2. You would think a Doctor would know a little more about Ds than that!! I am finding that a lot of people in the health care profession that should know about it dont! I had one Nurse tell me how I should explain Russells "disease" to my other children! Down syndrome a disease!! Anyway...
    Austin is in my prayers, and I hope all goes well on the 7th.

  3. we are in the same boat mamma, here to support eachother. I bet if our snorting and happy hacking boys were in the same room we would keep them thinking.

    I love your "Here's your sign" thing, I am going to write that pamphlet and publish it, we should do it together, a little do hiddly do for those who aren't so all knowing to fit perfectly and ready to hand out of our Down syndrome mommy pocketbooks :)