Jaime Albert Trost was diagnosed with Right-Sided Congenital Diaphragmatic Hernia at 19 weeks gestation. He was born at 34 weeks gestation on 4/16/09 as a hemophiliac with his liver and intestines in his chest. Jaime had his 1st repair surgery at 23 days old. He re-herniated in September 2009, causing his bowels, kidney and liver to be up in his chest. He had his 2nd repair surgery at 194 days old. Though Jaime still has many medical challenges ahead of him, today he is a thriving KINDERGARTENER who has beaten the odds!

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Monday, September 27, 2010

Sick Little Boy...AGAIN!

And so the CDH roller coaster continues...
Jaime had a scheduled pulmonary appointment today, but as usual it was anything but "routine." I initially set up the appointment because with the weather changes, I found he's that he's wheezing more. Turns out he started getting sick over the weekend and by the time we got to our appointment today, Jaime's "well" visit took a turn into a "sick" visit. Jaime has double ear infections and bronchitis. He received two breathing in the drs. office for his wheezing and was given a total of 5 Rx's. 4 of them for his breathing alone, an antibiotic and a medication for his bowels. We were told to follow up with ENT about Jaime's "frequent" ear infections in 2 weeks. Also, when he has the slightest sign of a respiratory infection, we are to call Pulm. for treatment which will most likely include steroids. The dr. feels that even though the infection started in his ears, they are draining and the drainage settles in his chest. The best way to make him feel better the fastest is with steroids. If he wasn't born with CDH things would probably be way different as far as illness protocol!
OK, let me back track a little, Jaime's been having diarrhea for over two weeks now. He didn't have any symptoms of being ill, just the diarrhea. We gave it some time before calling the dr. I called last week, our plan was to "watch it" and touch base again this week. Over the weekend, he was irritable, wasn't taking much to drink and was coughing/gagging and throwing up on what little he was "eating." This became a concern on Saturday, especially when he spiked a fever. The thought of going to the ER came up, but I was trying to wait it out until today knowing that I had this appointment scheduled already.
Back to today...while at the Pulm. I was telling her about his diarrhea, too. She was very concerned about this...so much that she told me I had to see GI today as well. At Hillcrest (where I took Jaime) they have a Cleveland Clinic Children's Specialty Care office. This is a time share office of multi-disciplines. Ironically enough, not only was it pulm's day, it was GI's day, too. So, we hung out to have GI see us, too. She ran some labs on Jaime (blood and stool), we, of course don't have those results yet, but I imagine we will by the end of the week. There may be a chest x-ray in Jaime's future, too...just to make sure things are where they are supposed to be...reherniation is always in the back of our minds! We spent a total of 4 1/2 hrs. at Hillcrest today, needless to say, I ended up having to call-off of work...actually Jaime and I walked down to my office at 12:45 to let them know I wouldn't be in at 1. It kind of stinks having to do that, but I didn't really have a choice today not to mention that Jaime and Jared will ALWAYS come first!
As for stats today Jaime is STILL 21.08 lbs. I guess the good news is he hasn't lost any weight, the band news is he hasn't gained any either. He was also measured at 31.5 inches tall!
That's all for now, I will try to update the results as I get them! I've been pretty busy with my 4 classes at school...and work...and Jared, who by the way started ice skating lessons again Saturday! :)
Here are a couple of pics I took this weekend on my cell!
Jaime and I with my new curly do!

My two favorite boys! :)
Not the best quality...it's from a cell, what can I say? :)
Happy Fall, All! :)

2 comments:

  1. poor little man! Praying he feels better soon and NO reherniation ! I can relate to always having that fear back in your mind.
    ((hugs))
    love the photos you sure have 2 handsome boys!

    Amber
    Owain's mommy LCDH

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  2. I stumbled upon your blog when Jamie was first born and I have been following ever since. I was drawn to your blog because my best friend from college is from Wickliffe and now lives in Willowick. It was weird. Anyway, my youngest is about a 1 month older than Jamie is. I know you are super concerned with his weight gain. Maybe he is just small. My son just had his 18 month check-up today and he is weighing in at 22 lbs 13 (10%) and is 32.5 inches (50%). He is so skinny, but my doctor isn't concerned because he is maintaining his percentiles. I know your ultimate goal is to get him on the charts, but I wanted to let you know that there are healthy babies out there, who are just as small :)! You impress me with all that you have gone through with both of your boys..God Bless!

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