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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Wednesday, October 21, 2009

Another Busy Day in the RCNIC

Another slide show of our day in the RCNIC! Thanks, Claire and Jordan-Max's (L-CDH) Mommy and Daddy for introducing me to a new picture site, I think I'm obsessed! :-) Slide shows for EVERY post...LOL!!!! Enjoy!!!!



As you can see from the slideshow, Jaime had another busy day! After a good night's rest, Val, from Child Life came in to play with him. She's so sweet and trying really hard to make sure he doesn't get "bored" around here! (Thanks, Val!!!)
Next, he ate a 1/2 of container of apple sauce in his NICU high chair...still sounds funny to me! After that, Angela came in to do some PT with Jaime. After a few minutes, Noelle (OT) peeked in...then joined his session. Those girls worked him SOOOOOOOOO hard today! He was doing all sorts of crazy things! He even got nicknamed "Thumper." Why, you ask....well, that's because he really doesn't move his right side, but when he gets excited he "thumps" his left leg....just like Thumper! He took a nap after his therapy session and Titi and I went to eat.
We came back only to find Tracey in here cleaning up a vomit-filled little boy! He still has that nasty, juicy cough. It gags him and he throws up. He's been really bad again tonight again. He's had some significant increase work of breathing followed by apnea episodes for the last couple of hours. All this...while asleep! Poor guy! His lungs, thankfully sound clear...this is all upper airway drainage. Not to mention some of his tracheomalacia coming into play. He's so incredibly exhausted, but just can't get restful sleep.
Aside from the cough and therapy...Jaime's been OK. He did have more hematology requested labs to check his platelets...apparently my labs were "normal" yesterday, so additional tests on Jaime were obtained. They had to take 5mls of blood out of the little guy just for one test! :-( They are just trying to figure out what the best OR plan will be from a hematology stand-point.
Titi went back home today since surgery is a little ways off. She'll be back if Tom doesn't come down for it. Thanks, Titi for keeping me company the last few days! Speaking of company...Carrie, Carter's mom and I had dinner at RMH. We were able to enjoy dinner outside...that's always so nice because the hospital is so dry and stuffy and we both spend 12+ hours a day inside. I'm hoping Cincy has a few more nice days...so that I can walk over from RMH a few more times. I did rent a car...mostly because of going home so late. Cincinnati Children's Hospital isn't in the best of neighborhoods, it's really not all that safe to walk alone at night....especially after midnight. (I almost always leave after midnight, take tonight, for instance, it's almost 12:30 A.M. and I'm still here-mainly because Jaime isn't completely stable yet.)
Anyway, that's about all from Cincy! I heard that the boys back in Wickliffe are doing fine. I miss them, it's sooooo weird to not see Jared...it's been over a week now since I've last seen him. I think he'll be a giant the next time I see him which will be after Jaime is discharged....in a few weeks. Due to the restrictions here, Jared is not allowed up here to visit...in fact, no one is aloud up here except Tom or Stacy...we were aloud to choose a permanent visitor aside from parents. We figured Stacy is the closest to Cincy and the most likely to visit more than once, so she's on the "list."
Oh, before I go...I know there have been several of you who have asked what the address is at Ronald McDonald House, it's 350 Erkenbrecher Ave. #17, Cincinnati, Ohio 45229. (By the way, Tom, I got your package this evening...it was PERFECT, thanks....love you and miss you!!!!) I'm off to pack up...looks like Jaime's Tylenol is starting to kick in...I'm going to go back to the house and catch some Zzzzz's of my own (just to start all over at 9:00 A.M.).
Good night...

3 comments:

  1. So wait- why is surgery a ways off? Because of his cough? I must of missed something-

    I really hope you are getting some sleep in this whole journey...!!

    I pray everyday for Jaime and you... ! You write like you are handling t his pretty well. You are so strong!! But really what other way is there for us to be at this time...so keep it up mom!! :)

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  2. Great slideshow. Jaime certainly had a busy day of therapy. He's in such good hands with Noelle, Anne, Angela, and Val. Emily certainly enjoyed her time with them!
    Hopefully once he has the next repair, these episodes of coughing and vomiting will disappear!
    Jaime is such a cute little man. Loved seeing him so "active" during the therapy sessions.
    Hang in there!

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  3. I've been thinking of you all - but also know Jaime is in the best place. Glad he looks so happy - and I hope that once re-repaired he will astound them with a quick recovery!

    Keeping you all in my prayers,
    Elizabeth

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