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!

Lilypie Birthday tickers

Lilypie Kids Birthday tickers

Wednesday, October 28, 2009

Another Rough Day!

Seriously post-op recovery STINKS! Today wasn't much better...just different!
After Jaime's code last night, he did stable out. When I called this morning to check on him (I just HAD to get my laundry done early), his nurse said he was OK. She said his paralytic was "officially" off at 6:00 A.M. making him a little restless. Also, Dr. Tiao took off Jaime's bandage exposing his staples. Over all his incision looks rather good. His x-ray showed that his left lung was still collapsed and his right one was just "eh." By 11:30 A.M. (ish) Jaime was coding again! They think he clamped down on his tube closing off his vent, not to mention they sucked thick, chunky secretions from it. His nurse was doing a sterile procedure with his picc line when all of this started. Obviously, Jaime wasn't tolerating this. The code was called, his heart rate went down into the 80's and his O2 sats went down to 9%. SCARY!!!!! They got him back up...kind of took a "minute" though, YIKES! As I said yesterday, blue is not a pretty color. His thick secretions led to cultures and blood draws, as well as antibiotics (I asked for those, doesn't hurt to be pro-active when it comes to these little ones).
After all of the commotion, Jaime was starting to wake up even more. I have sat by his side literally ALL DAY holding his hands and head, so that he wouldn't move them to pull the ET tube out. I missed lunch and dinner (until after 7:00 P.M.), but one of my CDH buddies went on a stealth mission to make sure I had a little something. (Thanks!!!! ;)
Anyway, other changes...Jaime's repogle (tube in his nose to suck out his stomach goo) was discontinued and there was talk of starting continuous NG feeds on Jaime at 2mls an hour. His surgeon really wants to see how things will move since his bowels were completely out of his body and put back in. While this sounded GREAT...once the repogle was removed, Jaime's nurse and I noticed his tummy getting bigger and bigger. Needless to say, a new order has been written to reinsert the repogle and hold the feeds. Other new stuff....Jaime's sedation and pain meds were increased! I suppose they did this because of Jaime's thrashing and desire to pull his breathing tube...LOL...yes, I'm being sarcastic, that's EXACTLY why they did this!
Also, one thing I failed to mention yesterday was that Jaime is receiving CPT's again. This time instead of "clapping" Jaime's chest, they are using vibration on it! Without going into too much detail...whatever type of instrument you can imagine would be used for such a thing, really IS used...CRAZY!!!!
Let's see what else....it's hard to think of everything it's been sooooo incredibly active in here literally all day. Oh, Pr. Eric came to do an anointing on Jaime. He used (for the first time, I might add) his special olive oil in a bottle made from an olive tree from Jerusalem. How neat is that? We our honored, thank you Pr. Eric!!!! It's always great to see you!
While he was here, another chest x-ray was taken. By 3:00 P.M. we found out that Jaime's left lung had FINALLY expanded...YEA!!!!! This was GREAT news! He also had a GREAT blood gas this evening, so his vent settings were finally lowered! (See it's not ALL bad!) There was talk of doing a bronchial scope this week if his lung didn't expand, I'm thinking that may not be necessary now.
I think that's all to report. Seems like there was more, I'm too exhausted to even think at this point! I haven't had but a few hours of sleep all week. I promise I WILL leave the NICU "early" tonight! I do have some pics to post...I even got a few of him waking up....my poor drowsy little baby!
Jaime's new and improved "war" wound!

Kim (RT) doing Jaime's CPT.

Jaime waking up...mornin'

Is that a smile?!?

Why am I so sleepy mommy? (pst....drugs)

Still there Mommy? (yeppers!)

FINALLY, ASLEEP!!!!!!


Here's hoping for a good night for everyone, especially Jaime! :-)

8 comments:

  1. Oh Jaime, you have been through enough already. It's time to behave..no more coding!!! And stop pulling at your tubes so your mom can take those Halloween socks off your hands and get them on your feet where they belong : )
    Be a good boy, get lots of rest and feel better soon!
    Love you little guy,
    Sue and Emily

    ReplyDelete
  2. Wow! I am so sorry you all are going through this! It's so not fair! Going through post repair op stress once is not fair ... twice, well that's just crazy! But I am so relieved to hear that the end of the day things turned around! Go expanded lungs!!!!!! I will pray and pray that Jaime will recover quickly and smoothly from this point forward and be home with you soon so all this hospital time can become a bad memory!
    (((Hugs)))
    Jennifer
    Mom to Dakota 12-25-2008

    ReplyDelete
  3. Sorry he is having a tough time but there seems to be tiny steps of progress--praying those tiny steps get bigger and bigger quickly for him. You need to take care of yourself too Sheryl--won't do Jaime any good if mom gets worn down and picks up those nasty old germies out and about waiting to pounce. So really try to get some rest and eat right--I know it has to be hard and you aren't thinking about yourself but it is important.
    Keeping you all in my prayers!
    Jean

    ReplyDelete
  4. ohhhhh I just hate to see little Jamie like this! I will say so many prayers for you as i lay down tonight. and he was still trying to smile.....he's been through so much God bless his little heart. I'm so sorry yall are going through this. What a strong little guy you all have.....lots of love Candice

    ReplyDelete
  5. Jaime is so strong! So are you. We are thinking about your family.

    Lots of love from Texas,
    Holly, Chris, and Ruby

    ReplyDelete
  6. I'm so glad the day got better towards the end. It's always nice to leave a postive note!!! Makes it easier! Jaime is a strong CUTE boy! :)

    Make sure you get some rest- I know it's hard, but he needs a healthy mommy!! :) Hang in there!!! You are doing great!

    ReplyDelete
  7. It is really hard to see Jaime like this...but he is still adorable! I am so his lung finally opens up. Will continue to pray for Jaime to recover asap.

    love,
    dai

    ReplyDelete
  8. Sheryl, I'm so sorry to hear about Jamie's post op mishaps! I haven't looked at your blog for several days so I just found out. We are always thinking of Jamie and your family. Hopefully, the CDH roller coaster is all uphill from here now that his fascia is closed. Take Care,

    ReplyDelete

Note: Only a member of this blog may post a comment.