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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Friday, May 8, 2009

Jaime is REPAIRED!!!


Hello All,
After a very, LONG stressful week, Jaime successfully got repaired today.
He went to the OR around 8:20, he came out just after 11:00. We got to see him at 11:30. It was funny, before surgery, the team was standing around Jaime and someone said "we're ready to move, no one answer their phones" (last week the phone rang with the blood results just before wheeling Jaime out)...well, guess whose phone rang...Pastor Eric's. The timing of it all was priceless! We all got a good chuckle and off Jaime went!
I must admit, watching my son getting wheeled to the OR and not knowing what was going to happen was just about the worst thing I've ever had to do! It was just heart-breaking! I kept it together because Jared was with us, when we got in the car, Jared said he wanted to cry when Jaime went to surgery...Tom and I both started to tear up. After we dropped him off to school...I "lost" it! The waiting was HORRIBLE! Tom and I were thrilled to see Dr. Tiao around 11, but even he looked drained!
Dr. Tiao told us that Jaime made him sweat and at one point made him anxious, which he told us wasn't good for his heart...HA! Go figure, one of my boys challenging the doctor! He and Dr. Crombleholme made the decision together on how to actually complete the repair. When they opened Jaime up, they discovered that he had no diaphragm on the right side, so there were no muscles to sew together. Having said that, Dr. Tiao stitched the corners of the where the diaphragm would be, put a very large Gortex patch over the diaphragm site and stitched over his ribs. They sewed Jaime's skin back, but did not sew the muscle under the incision site back together...yet! They need the swelling to go down from moving his liver and bowels back before they can actually sew the muscle back together. We were told that the entire right lobe (which is the bigger of the two lobes) was sitting in the middle of Jaime's chest, as were most of his bowels. Every time Dr. T moved Jaime's liver, his heart rate would go up and his blood pressure would go down, so they had to work in 3 minute increments. He said he moved the liver up and down several times in order to get it back to it's "normal" position. Once the wrong items were moved out, Dr. T said they found more right lung. Jaime has about 1/3 of his right lung and it still needs to drop down and it will continue to grow some more. He will never have 100% on the right (or the left for that matter), but he's got more than anticipated and that's good enough for us!
Jaime is sedated and paralyzed (medicated induced) and probably will be for the next 24 hours or so. His blood gases have been great, he's even down to 26% O2 on the vent(room is 21%). He's not too swollen, but we're still early in the post-op process...that will probably change tomorrow. He's peeing like a champ still and his vitals have been stable. We're hoping he continues this way, but we've been warned that this is just the "honeymoon" stage. It's nice to see Jaime "breathing" with his chest moving up and down instead of watching just the bottom of his left lung moving. Oh and as a side note, Jaime's incision wasn't as bad as I thought it would be, we're hoping that the skin stays in tact and doesn't blister. (He had his skin biopsy in the OR, too, for the EB testing which should be back in about 2 weeks.)

Anyway, that's the post-op scoop!

Thank you for all of the wonderful thoughts and prayers! Let's continue to pray for an uneventful recovery period!
Love,
Sheryl

11 comments:

  1. That's the news we've been waiting for! Go Jaime!!!!

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  2. Awesome - and I will continue to pray for a very smooth recovery and LUNG FUNCTION chants!
    Elizabeth

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  3. Praying for a good and uneventful post-op and that Jaime remains stable! He is one strong little boy...keep fighting Jaime!!

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  4. WOO HOO!!! I have been "blog stalking" you all day waiting for the news! I am soooo happy he is out of surgery! Sounds like he gave those Dr's a run for their money! That's why we pray for the Dr's as well as the patient! :) What a rock star!!
    Carrie and Noah

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  5. Your post made our day!!! Way to go Jaime!! We know you guys have had an anxious day and we are so happy you all can take a sigh of relief that this part is over. We are just so happy for you guys! Take care and know we are thinking about all of you. Keep it up Jaime!!

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  6. Sheryl & Tom,
    It's Ryan. My mom just showed me the blog.Jaime looks great. We have to get Thai, when you can.
    School is done for me so I can meet you for lunch. Let my mom know.
    My mom says that Jaime's scar is much better than mine.My mom says that we can compare battle scars someday. You have seen all of mine.
    Ryan

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  7. So glad surgery went well. Hopefully Jaime will have a nice long "honeymoon".
    Also loving that Jared gets to attend school.
    Thanks for doing such a complete job of keeping us all informed on Jaime's progress.
    Hugs to all,
    Sue

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  8. So glad to hear Jaime is repaired and doing so well. What a fighter! He looks great! Continued prayers for you guys!

    Jen

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  9. Yes! Just what we wanted to hear! I'm so happy the surgery went well, here's hoping the recovery goes just as smoothly! Keep it up, Jaime!

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  10. Way to go Jaime...we knew that'd be a piece of cake for you. :-) Now on to an uneventful post-op phase.

    Jeremy & Carrie Adler

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  11. What a little fighter! Way to go Jaime!
    I will continue you to pray for you and Jaime as he recovers from surgery.
    darcy
    http://ittybittyblog.wordpress.com

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