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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Thursday, September 17, 2009

Word in the hall is....

The word on the street...aka hall is that Jaime has changes on his chest x-ray. This came about after 6:00 P.M. tonight. He is still retracting a lot and is very pale...he was even doing something they called "see-saw" breathing. This is breathing from the diaphragm backwards. It was really strange to see, in fact when I noticed this weird breathing I called the nurse in who then called the attending in. His sats have been between 88 and 100% and for the most part his lungs sound clear. There is just diminished sounds on the right...some of which is normal.
Anyway, here's what the drs. are thinking: pleural effusion vs. collapse vs. pneumonia. He has been started on antibiotics. I was told that he will be discharged once he is back to base...that could be tomorrow or next week. We just don't know.
He slept most of today, but did have some awake time when Tom and Jared came up. We all ate up in Jaime's room, then Jared and I took a trip to the gift shop. I needed to buy nail clippers for Jaime...poor kid scratched himself pretty badly! Anyway, when we were down there, Jared picked out an ELMO cube for Jaime...he loves it. Here are some pics from this evening, they again aren't great because they were taken on my phone.




Jaime is in a bed-swing, it's pretty cool...the hemophilia child life specialist brought it to Jaime. He's still in the pulmonary step-down unit. Unfortunately, tonight he has a room mate. It's a teenager who is disabled. He, too has respiratory issues...you'd think they'd keep these two separate...guess not! He's not loud, but he has music on that is and he has a bad cough and requires the R.T.'s to be in there often. I just hope I can sleep tonight...last night I slept for 3 hours. I didn't go home today when Tom came up, instead I showered here in the room. I'm still feeling a bit lousy...congested/coughing...probably not the best place for either us to be! :-( Hopefully, Jaime's retractions and see-saw breathing will stop so that we can get home tomorrow. His antibiotics, as of 9:00 P.M. were oral, so it's not like I can't do that at home, we'll see! It's up to Jaime to give us signs that he's ready, (Lord knows that I am ready to go home.)

Well, I'm off to do our laundry...I was thrown up on earlier, I had the bag ready for Tom to take home and we both forgot about it. I thought it would be gross to leave our clothes sit over night, so I'm using the patient laundry room! Good times!

3 comments:

  1. Just wanted you guys to know that I'm thinking of you, and hoping that you'll ALL be feeling better soon! What a roller coaster ride!

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  2. Poor Jaime. I feel so badly for him, having to go through more breathing troubles. Prayers for a healing night.

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  3. We are praying for Jaime and hoping he goes home soon! Jaime has scared me this week, because I am so nervous that Katie will catch something this winter and we will end up back in the hospital too!
    ~Beth, mom to Katie (RCDH 4/9/09)

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