Friday, August 25, 2006

My conundrum of a boy...


This is an old picture, but cute.

Miles and Riley were making Labor Day cards for their grandparents. Ya know, cause Hallmark hasn't come up with cards for this holiday, so we had to make own! They were finger painting and making a royal mess! Miles had his hand covered with red, yellow, blue, purple, green and brown, he looks at me with this oh so cute face and says "Boop!" I was very cute!

So in speech therapy today, Miles was to work on finishing words. He will say 'out' but it is 'ou' and he will say ball but it is 'ba.' Man, he did not like actually working instead of playing (and learning at the same time). He threw himself down on the floor and had a little fit. He eventually came around, after she put the matching (finishing the word) game away. He did try to say bounce, roll...a few others that are escaping me right now.

Anyway...more testing on the horizon for Mr. Miles. He up-chucks all the time. Well, he is a fine balance of erythromiacin and miralax so that he a. won't puke when he poops and b. will digest his food. The other day he had a snack at 3, took his erythromiacin at 5 and 'gave me' his 3 o'clock snack at 7:30 and again at 8:15. So...either the medicine isn't working or he isn't digesting his food. What he 'gave me' looked just like he had taken it off of his plate. It certainly didn't look like it had been sitting in acid in his stomach for the last 4 1/2 hours. His gastro, Dr. Krishna, suggested that Miles have a gastric empyting scan. So this has been scheduled for Sept 7 @ 9am. This will be lots of fun (I can't get it to stop underlining!) the test is in the nuclear medicine department at TX children's. It will take an hour and a half. He has to be strapped to a table for the whole deal while they take pictures of his food digesting. This is after he eats eggs, oatmeal or milk with the nuclear meds in it. I cannot imagine that this will be fun. We did this before when he was about 6 wks old. We found that he had pyloric stenosis and spasms of his pyloris. The next thing, if we aren't happy with the results of this GE scan, is an endoscopy. That is more sedation, more intubation, more tubes, more low pulse ox and more convincing nurses that his pulse ox really is okay - for him. I also may have to call his urologist...he held it the other day for 17 hours! Checked with the doc (not the normal doc, she is out on maternity leave---congrats Dr. T), she didn't seem concerned because he still had tears and sweat. Today, he keeps pointing to his pants and saying "ow." Then peed...alot...like through his pants, he hasn't done that in a while. Could we be having our first UTI? He has 'outgrown' his urinary reflux.

But as I sit here in my chair while he is trying to spin me in circles, saying "doh ma, doh woun" I am filled with such happiness just being his mommy :)

Sorry for all the technical words this time :) Oh, the other thing he did while he didn't pee for 17 hours, besides vomit 6 times and the last time was green, his legs turned a purpleish/blueish color while I was holding him. His head was on my shoulder, my hand on his back and bottom. The cardiologist hasn't called back yet, the pediatrician thought I should check with him. While the legs were colorful, his pulse ox was normal. It happened twice. When I set him down in the sitting position, they went back to pink. He must be wired funny because I would have thought it would have been the other way around. Again, the doc (not the normal doc) wasn't concerned...well, I can't go that far. She said she has no idea what could be wrong. She said check with his cardiologist, Dr. Justino and his gastro, Dr. Krishna. So, that is what I did.

btw...I am on a mini vacation! Until the 30th I am off work! Just me and Miles during the day and I get extra special time with both of my boys!

4 comments:

Anonymous said...

Hi girl..
what a time you've been having!
You guys look so cute in this pic...
Terri

Granny said...

Miles honey, PaPa had the same test and he was a good boy! Didn't wiggle at all so they didn't have to tie him down. Although, in another 15 years they might have to....

Sarah said...

We'll be praying for Miles on the 7th. Let us know how it goes.

GoofyJ said...

My goodness, sounds like you are just being run through the mill. We will be praying that everything gets figured out and goes well. Keep us posted. :)