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 toddler who has beaten the odds!

Lilypie Third Birthday tickers

Lilypie Third Birthday tickers

Friday, July 1, 2011

Day #1 on High Cal....XXX!!!

So, Jaime's officially not a fan of his high cal formula. He hasn't finished a whole box of it yet. He drank 4 oz last night and about 6 oz all day. He's supposed to drink 24oz. By dinner time he was throwing up. UGH! The drs. really wanted us to give it to him at full strength, but unfortunately, Jaime's little body has other plans! :( There was discussion about conducting a stomach emptying test, I think I'm going to ask Jaime's drs. to do that here. We can't have Jaime drinking just to end up losing it all. He had some water this evening and by tonight I gave his old standby, Pediasure!
Other than the formula ordeal, we had minimal excitement in the ER. Jaime only got 2 IV sticks to place his IV today. I asked the dr. to have the nurses place a line rather than just infuse Jaime. She knows me and agreed that I could take care of Jaime at home. They put the line in and I infused him. The nurses were all in the room watching me...it was the first time they had ever seen Factor being infused, yep, that's exactly how rare hemophilia is. The IV flushed well tonight before Jaime's bed time, I'm hoping it stays in so that we don't have to go back to the ER for another one! Just TWO MORE DAYS! ;)
Another place we went today was the pediatrician. Jared had his "well visit" today. He's 69lbs and 51 inches tall! That translates to 85-90% for weight and 60% for height! I laughed and told his pediatrician that we're not used to seeing such high percents. Jared's usually around 50% and Jaime, well, we're lucky if he's 20%. Jared's vision is slightly off....the left eye more than the right. It's something that we're going to have watch. On a random note...the boys' pediatrician told me that she had all of Jaime's results that were in from Cincinnati. WOW! That was super fast! See, that's why we love Cincinnati! :)
In other news....just to add to a bizarre week, my mom hurt her finger. I took her to Urgent Care this evening (and her friend met us up there). Turns out she has a "mallet finger" and needs to see a hand specialist. It's currently splinted.

After Urgent Care, we had to meet Jaime's social worker because as of today they are required to see their patients within 3 days of discharge. We love her, so we don't mind, it was just another weird thing to add to our week! The best part was where we met her there was an AT&T Store...Jaime was FREAKING OUT! It was super cute...and yes, I've got pics! See below! That boy and his AT&T fascination! I'm going to call AT&T and have them use him as their new official spokesman! He LOVES it! :)





I'll conclude with positive thoughts that the IV stays functional so that Jaime doesn't get anymore pokes! He's already had 20 needle pokes in 5 days, I think he's good for a while!
Until next time!

1 comments:

  1. Hi
    My name is Jenna and I came across your site. Jaimie is a real courageous, strong, determined fighter. He is a brave warrior, smilen champ and an inspirational hero. I will be praying for him and keeping him in my thoughts. I was born with a rare life threatening disease, and I love it when people sign my guestbook. www.miraclechamp.webs.com

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