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, February 1, 2010

Another Dr. Appointment

Jaime has progressively been getting worse over the last 24 hours. I called his pediatrician today to get him checked out. Dr. Hellerstein wasn't in, but Dr. Namrow was. He's seen Jaime (and Jared) many times. He listened to his lungs..."bilateral junkiness" (AKA Bronchiolitis). He checked his ears, cleaned them and low and behold, a left ear infection. Dr. Namrow and I both agreed that we didn't want to re-admit Jaime into the hospital. In a "normal" situation, that would have been the protocol, but Dr. Namrow knowing me (meaning he knows I would do absolutely ANYTHING to keep him home) decided to send us home and put Jaime on an antibiotic. This will be for the next 10 days...we are scheduled to see Andrew (pulm) in 10 days, so providing we have no issues...that will work out just about right.
In addition to Jaime's routine medications, we are adding...Motrin (he's been on Tylenol, but it's not good for the liver over a prolonged period of time), Augmentin (antibiotic), Zyrtec (antihistamine) and Xopenex (nebulizer breathing treatments). He's a bit more like himself tonight. The Motrin works great, we just have to be careful because technically hemophiliacs shouldn't be taking Motrin. He is continuing to cough, gag and vomit...this happened with just about every bottle today. He is still peeing well, so I think we're OK for now. Jaime is back to continuous O2 at a 1/2 liter. We are to keep him on this until we see Andrew on the 11th. Dr. Namrow said that the most important thing Jaime needs right now is to grow. (Jaime's down to 16lbs 1oz.) He said that once we get through the first winter, things should settle down. I sure hope so, I feel so bad for Jaime.
I have to say that it still amazes me how some CDH kids come away from all of this unscathed and yet there are some who are so severely ill...then there's Jaime...somewhere in between. Jaime has always been teetering on the fence...from my pregnancy right on through until today. Guess that's just going to be his road in life. People are still amazed at how it's nothing for us to suction Jaime or clean up vomit all of the time. It's our new normal, it's OK. We can't really complain about it, we signed on for this when we didn't end our pregnancy last year. And Jaime is so stinking cute...(not to mention how much Jared LOVES being an older brother)...it's all so totally worth it! :)

Here are a series of pics taken of that little stinker and his O2 today!
Me: What are you doing?

Jaime: Nothing, Mommy! Tee, hee....
Me: No, no, Jaime.

Jaime: You're funny, Mommy! Giggle, giggle!

Me: You're done!
Jaime: OK, Mommy, I'll chew my fingers!
Happy February, all! Let's hope for an early Spring prediction tomorrow! :)

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