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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Tuesday, December 22, 2009

ER Visit

Jared and I went to The Smith's house for lunch today to exchange Christmas gifts. We had a really fun time. I took a few photos, I was laughing because I didn't get a single one of Jared. Oops! HA!
Here are pics of the kids with their presents...you know, except for Jared. All of the kids really enjoyed their presents, thanks Colleen. We are just mostly excited to have Jared's Bakugan's organized in his fancy rack from you guys!
Lauren in her Fancy Nancy dress.

Connor reading his Lego Star Wars book.

Jaime with his "Jaime" (spelled correctly-J-A-I-M-E) bag. Everyone seems to spell Jaime wrong, Colleen said she was going to tease me and have it spelled wrong...thanks for spelling it right, girlie!
After Colleen's, Ellen (PT) came. I told her to look at Jaime's incision site. She felt that he was guarding it more and was definitely less active today. She gave him an "easy" day, (personally, I think they are all easy). She was concerned and wanted me to call the dr. Well, I did and scheduled an appointment for tomorrow. After she left, Dale (RN) came over. I asked him to peek at Jaime's site and listen to him. He said his lungs sounded great, but was concerned with his behavior and and the fact that the "bulge" was bigger. He thought that maybe we should go to the ER for an x-ray, rather than waiting for tomorrow. So, we did. He took Jared for us and off we went to Hillcrest Pediatric ER. (For those of you not familiar with Cleveland, Hillcrest is a local Cleveland Clinic Hospital.) I have University Hospital insurance, but as we all know, you can go to any ER. This was the ER that CORRECTLY diagnosed Jaime's re-herniation and Jared's hemophilia. We have a lot of faith in them, plus I used to work there and know everyone.
Anyway, they took Jaime back right away and assessed him. They all agreed that he needed an x-ray. I brought his older x-rays with me for them to compare. So, I'm not entirely crazy, Jaime does have an issue with the incision site...it's called an "incisional hernia." His diaphragm is not re-herniated, thank God, but his incision closure (fascia) most likely is. He does have a bulge on the right side again and when he pushes up, you can almost see his bowel loops like before when his fascia wasn't closed. I'm sure, once he gets wind of this, Dr. Tiao, Jaime's surgeon, will have a heart attack (after all, he did say it was a tight closure and he almost didn't do it, but thought he would try anyway.) This will need to be surgically repaired, but it is not an emergent surgery. We are due back in Cincy on Tuesday and will be seeing Dr. Tiao as well. We will know more then as to how and when he thinks this should be repaired. We did hear that it's a fairly easy repair....of course, this is Jaime and we all know nothing is "easy" with him, especially with the hemophilia...that complicates everything!
Tom holding Jaime after his x-ray that he laid so incredibly still for. The tech couldn't believe how good he was...it's sad really because he's had so many, and at 8 mos. he already knows what to do, arms up, lay still! I didn't even have to hold him, nor did we strap him down! You can just barely see the bulge on the right side at the bottom of his ribs, Tom's arm is in the way.

Not to end this on a bad note, Jaime was obviously weighed today and I am pleased to say that he is 15lbs, 6oz! Jaime has officially gained 1 whole pound since his second NICU discharge 1 month and 4 days ago. We credit all of that to his formula change! I hope that the drs. in Cincy are just as excited about this as we are.
Well, that's about all...not horrible news, not great news, just another bump in the road and surgery in our future! Could be worse!

Hope everyone is ready for Santa! We sure are here! Safe travels to all of the out-of-towners, especially, Titi, Poppy, Grammy, Nana and Papa! :) See you all REALLY soon!

3 comments:

  1. Jaime, would you please quit reading that medical journal under your crib? I know your smart but you keep coming up with more stuff to throw at Mom, Dad and your doctors and me too! Dare to be different - huh?

    Sheryl this child! What can we do with him!

    I hope you are having a wonderful holiday ...

    Sending thoughts and prayers,
    Elizabeth

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  2. Jeez! Always something to worry about huh? Carter M has that kind of hernia/bulge as well. His mom did an entry on it a couple of weeks ago .... I think they are waiting a while to repair it. http://bradandkellie.blogspot.com/
    I hope you guys have a wonderful Christmas and the Cinncinnati appt eases your mind!
    Hugs,
    Jennifer

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  3. Hi Sheryl,
    Katie also has an incisional hernia, but it is very small. Of course, I was greatly concerned about it at first and mildly panicked, but her surgeon is actually not worried about repairing it right now. These babies love to keep us on our toes!!
    Beth

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