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, October 12, 2010

ENT/ER

Today was our infamous ENT appointment...it didn't go exactly as planned. Jaime's been coughing a lot over the last two days...with that he's been gagging and throwing up. Last night, Jaime coughed, gagged and threw up a few blood clots. (gross, I know!) Being a hemophiliac, that prompted a call to the pediatrician. She told us to watch him and if he got worse to bring him to the ER. We finally got him calm and to sleep, but about 3:00 A.M., he was wide awake...actually the whole house was because of his coughing. Poor little guy, nothing made him feel better.
On to our ENT appointment...lo and behold Jaime's ears are STILL infected, even after being on antibiotics for over 2 weeks. Tubes will be in Jaime's future, but they can't do them until his ears are clear. The ENT ordered a stat hearing test just to see how much, if at all, the fluid has affected his hearing. Well, it wasn't good news. Jaime's results show that he has significant hearing loss. This may or may not get better as his ears start to improve. Only time will tell. It makes sense considering he hasn't been speaking very much at all and has no new words, in fact, he has less now than before. His speech therapist and I have been talking about this debating if his lack of speech was because of his ears or because he's been focused on walking...now we have our answer.
While we were there, Jaime's lungs didn't sound very clear, so the ENT called Pulmonary who requested that we go to the ER. So, we packed up and headed to CCF ER. It was the first time we've ever been to that one. It was nice, they took us right away...in fact, we were told that they were expecting us and saved a room. After vitals, the resident and ER docs came in...we chatted, Jaime went to x-ray...and then we waited. His x-ray came back hazy, but he's on an antibiotic and breathing treatments...vitals were stable, so after several hours, we were discharged home. We are due to follow up with Pulm in the morning.
Oh the last little bit of info to share is that Jaime has lost over a 1/2 lbs since Friday. He's only 22lbs...and that was fully clothed with a diaper. He was 22.08 on Friday in just a dry diaper. So, that's something else we're keeping an eye on.
OK, after saying all of that...you'd think this kid would be crabby and mopey...well this IS Jaime...while he DOES have his moments, for the most part he's happy as a lark! These pics are ones I took tonight. Other than a bloodshot eye (either due to a burst blood vessel or infection...no one is really sure)....he looks OK...maybe just tired. Jaime sure does love his big bro!
Happy boys!
Relaxing in the recliner!
Jaime crossing his legs like Jared.
I love their smiles! Jaime was rolling into the chair playing peek-a-boo.
Jaime literally climbed on Jared who was sitting at the table doing homework!
(Notice the red right eye?)
The only other happenings today is that it would have been my Grandma Buttari's 91st birthday today. (Many of you know that my Grandma and I were very close, she passed away in 2007 after a long battle with cancer!) We've always celebrated her birthday with her...and continued to celebrate her life every Oct. 12th. Jared picked out a cake for her tonight, he even sang to her, he really misses her, too. He sure was her little buddy!
Here's to you, Gram, not a day goes by that I don't think of you! We love you and miss you so much!
Jared specifically asked for it to be written on in all of those colors!
Proud of Grandma's cake...he sang to her after I took this pic!
Jaime enjoying a few bites of cake, too!
OK, I'm off to bed, I haven't had much sleep at all in the last 3 nights. I will try to update more tomorrow night...until then...

3 comments:

  1. Wow Sheryl! There certainly never is a dull moment in your life! Poor little Jaime : ( I sure hope this hearing loss is temporary. He doesn't need any more long term issues. Hope the pulm appt tomorrow goes well and his ears clear up quickly!

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  2. Can y'all catch a break??? Will lift you up in prayer that his hearing and lungs clear up! Always thinking of y'all! Also, please take a look at our blog. The Dickersons were just diagnosed at 36 weeks, and are terrified. 17% of the liver is up, and the lhr is a 1.1. They are scared. Please pray for them. They are delivering a week from this friday.

    Thanks,
    Stephanie

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  3. I just wanted to comment on the hearing. I started getting tubes when I was 18 months and ended up having them 6 times, the last time being when I was a freshman in high school. My eardrum has also ruptured. I have NO hearing loss and after all the fluid dried up each time I was able to hear without a problem. They also now think that all of my ear infections were allergy related.

    I have worked as a ped. OT for 10 years and was in a multi-disciplinary clinic with PT and speech. We noticed that when kids began making huge gains with gross motor...like he is with walking, the speech often took off soon after. Hope this is the case for you guys!!!! Hope that sweet boy feels better soon!!!

    Jennifer Holmes

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