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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Sunday, August 2, 2009

Early Post

I've decided to post an early post today, as I have so much homework to get caught up on. It's been very hard trying to fit in school with Jaime's needs, but I'm doing the best that I can.
Last night, Jaime woke up in the middle of the night for his bottle...and didn't ever really go back to sleep until this morning. His breathing has been either really fast to the point of him retracting or very shallow. Not too much in between. He's satting consistently at 100% and he's back down to 3/4 liter O2. We're not entirely sure as to what's going on. He has also thrown up 3 times today so far...this is not normal for Jaime at all. We know for sure that he's not constipated as he had 3 good poopy diapers yesterday and his little pouch is not distended. Poor guy has already had 4 wardrobe changes!
We were going to take Jaime for his first pictures at 3:00 P.M., that won't be happening for sure...darn! Sometimes I think that being home is much harder than being in the NICU. Don't get me wrong, I'm glad that Jaime is "stable" enough to be home, but being here complicates things, especially when his drs. are all over the place. Cincy drs. are insistent that we come back there and Cleveland drs. feel they can manage him from here. It really stinks not knowing who to call to question our concerns. Jaime is due back at the home pediatrician on Tuesday, but I think I will call her tomorrow to see if she can squeeze him in Monday instead.

In other news, Tom's parents left after lunch today. Jared had fun at their hotel last night...he gave it an "X+" which apparently in Jared's world, means good. HA!

I'm off to do homework, Jared is playing Legos, Jaime is resting and Tom is heading to the store to buy....you guessed it...diapers! The hospital hooked us up so that we have not had to purchase any until now!

Enjoy the rest of your Sunday.

4 comments:

  1. I so aggree that being home is harder than the NICU some days!! I feel like I am always second guessing myself and finding Dr's to manage his care close to home had been a nightmare!! Hang in there, please don't hesitate to call me if you ever need someone to talk to!! We are praying that he starts feeling better soon!
    Carrie and Noah

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  2. Sorry Jaime is having a rough time. You are right, CDH sucks!!!!!!!!!!!!!!!! Let's hope that the boys get back on track soon enough, they deserve it. Try to get some rest too. And don't worry, whatever decision you make about care will be the right one for you...that doesn't help, I know, but I'm sure that either choice will be a good one.

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  3. Hope Jared was happy with the tooth fairy and praying that things get better for Jaime!

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  4. Anxious to know how it went at the doctor today. I can only imagine how hard it would be to have him home with the monitors, etc. Shawn and I will pray that he feels better soon.

    Love,
    Stephanie

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