Thursday, December 16, 2010

Making rash decisions

Sorry, couldn't resist the pun.
The rash is back- the interesting, unspecified, unidentified, not-going-away rash. Last week I took him in because it looked pretty bad and a few of the spots were weeping. The pedi said it was definitely NOT viral and gave me a steroid cream to put on it. This week, because the steroid cream was not working and it is spreading, I took him back in. The pedi got the other pedi to come take a look at it, and now it is DEFINITELY viral. So annoying, could someone just find out what it is! Last go round I had an appt. with a pediatric dermatologist but the wait was so long that by the time the appt came up the rash was gone and I cancelled it. Now I could kick myself, but c'est la vie. I will try again.
New developements:
1. His right pulmonary artery is slightly enlarged. This comes from the new pulminologist who finally looked at Tomas' x-rays. The newest x-ray is about 6 months old though so we have a follow up in early Jan with cardiology to check it out and try to avoid that pesky pulmonary hypertension that plagues so many of our DS babies.
2. After both my husband and daughter mentioned that Tomas' pee smelled like maple syrup I finally brought it up to the doctor. I had noticed but didn't realize it was that noticable or that it mattered much. Turns out there is such a thing as maple syrup urine disease. It is a METABOLIC disorder (no surprise there) that comes from the bodies inability to break down certain proteins. I have to wait for the next syrup-smelling pee (it is only intermittent) and then collect and freeze urine. This will be the second time I have frozen pee-pee in the back freezer. Just too weird.
3. One of his abdominal hernias is opening up again. This is brand new, as in I just noticed the ball on his belly last night. It is still small, about 1/2" across, and  I will just monitor it for growth. After the last surgery, Tomas' surgeon told me "the next time I go in I'm using mesh." I thought, "What do you mean next time?". Apparently he knew the fix was only temporary. Hopefully, we have a while before that needs to be addressed, but at least it is something we are pros at dealing with.
4. He has always slept poorly, but the last two weeks he has outdone himself, and caused me to fall down in the garage the other day out of exhaustion and dizzyness. So 2 nights ago, after checking with the pedi, I started giving him melatonin. The first night it did not help at all and on top of it he had a rather long and low central apnea episode that I had to stimulate him for to get his O2 levels back up. Not fun. The pedi said it could be from the melatonin as most of Tomas apnea is obstructive (he has very short central spells every once in a blue moon, but none like that night). So last night I gave it to him one more time to test it, and it went better. He slept like his previously poor-sleeper self, and no central apnea episodes. Which felt like a night at the spa for me. I'll keep using it and see if things continue to improve.

Other than that the regular stuff continues, blood counts low, immune system low, waiting on the metabolic tests to come back.
But you know I need to leave you with a smile (and a kiss):


  1. Love the box, a great way to entertain a baby and keep him in one place!

  2. Okay, so I am reading your post and feeling so sad for you and all you have to endure on a daily basis and actually feeling kind of "dark". Then, I scroll down to the pictures and suddenly all feels right in the world and everything you have to endure seems so SOOOOO WORTH IT!!! That kids smile trumps any I have ever seen before!!!

  3. Cute pics dorothy! Our state screens for maple syprup urine disease as part of the newborn screening. If you google your state +newborn screening,it should tell you if he has been tested for that already. What a pesky rash! We are dealing with a rash too,drs calling it 5th disease :0

  4. Just look at that cute face. I want to eat him up he is so adorable! We can't live without our melatonin over here :) Good luck with the rash.

  5. Sending you peace amidst the chaos.

    And that beautiful face,almost makes you forget about all that is going on within that precious body,doesn't it?

  6. He could not be more beautiful! Our world is in the sad state of things it is because Man has somehow come up with the idea that they know more than God does! God creates every child. God sees the begining from the end we only see what is in front of us or what we precieve to be in front of us. Each one of us touches many lives in many ways we may not even know about. We grow closer and deeper in the Lord through our trials not our mountaintops. I would encourage all of you to also visit Lead Singer Matt Hammit's blog as well very inspirational...