Heart Cath!

Just wanted to pop over to the blog to let everyone know that after an extremely long day yesterday (bad sedation side effects where Jaime was flopping like a fish for literally HOURS-even has some bruises to prove it and far too many needle pricks-6 yesterday and 3 today), Jaime had his heart cath today and did AWESOME! :) His cardiologist came in the room and said "do you want the good news, the good news or the good news first?"
His heart looks like a "perfect CDH" heart! Nothing unusual was found and Jaime has no pulmonary hypertension. He was also asked to be part of a research study and the "normal" findings from CDH kiddos weren't found in Jaime...which is AMAZING!!!!! He has no heart issues...just some diminished blood flow to the right lung which is completely normal in CDH kids. This is such great news...thank you everyone for the keeping Jaime in your thoughts and prayers...someone was listening today! (I will say that Jaime was saying "Goo-goo" a lot when he was waking up from Anesthesia...Jaime doesn't usually baby talk like that...so, we were thinking that "Goo-goo Grandma" may have had something to do with it! Thanks, Gram...Love you!)
Now the downside to this terrific news is that Jaime still has a lot of issues that need to be addressed, most of which are pointing towards Jaime having a bad airway. We know that he has a subglottic stenosis (significant narrowing in his upper airway) and trachealmalacia (basically a floppy airway). For those of you wanting to look it up...here are a few sites that talk about each issue. http://www.tracheostomy.com/resources/articles/subglottic_stenosis/index.htm and http://emedicine.medscape.com/article/1004463-overview. Having said that, we also know that Jaime has a small right lung, chronic lung disease and indeed does have diagnosed asthma. So everyone is thinking his respiratory infections, easy fatiguing and growth are directly related to his, for lack of a better term...crappy airway. We are supposed to follow up with the aero-digestive team down here in Cincinnati at some point. It just seems like they can't quite get all of the things aligned. Jaime will need lots of tests and a few procedures, we've been told that he has a whole laundry list of things to check out. Most are for "rule out" purposes only, but still they're on the list. Jaime's cardiologist jokingly said that he fell asleep reading the list...HA! I haven't seen it myself...I just heard the rumors about it! Tee, hee!
As for a quick weight update, Jaime is still just over 25lbs. (25.1) Not surprising...he was plumped up the last few months from his steroids. He's been off of oral steroids and just on inhaled ones, so he's just about back to baseline which means...no weight gain. He's tall though, about 33 1/2 inches. He's totally growing out of his 12month pants...even some 18 mos. pants...in length only, they totally fall off of him. I imagine once summer hits, that he'll be wearing 9/12mos bottoms again. He's such a little peanut...but a cute one! :)

Jaime this evening, several hours after his 4 hours of laying flat and after dinner!
He has an IV in his left hand and the "bow" on his shoulder is our make-shift back pack for his telemetry pack. (He's on a heart monitor and pulse ox right now). It's blurry, but you can just barely see the wires coming out from under his pj shirt.

As for Mr. Jared...he's having a good old time in Columbus with his Titi and Michael! I heard that they went to the library to get out paper airplane books. Michael also took Jared up to Titi's work and they bought her flowers, too! Today, they all went to the Lego Store...and yes, Jared got another new set!

Someone got a Lego railroad crossing set! Now he wants more Lego track and an RC Lego train!

He's having fun and behaving, too, from what I hear! Hopefully that will continue as we'll be in Cincy one more day. Jaime's hematologist switched his IV Factor doses from 12 hours to 8 hours, so we'll be hanging around the hospital tomorrow waiting for Factor doses and we'll need labs drawn with results back to see if we can leave! The hematologists just want to keep him safe after such an invasive procedure!
So, I'm sorry to say that I don't have more pics to post and that these are just from my cell phone. I have my camera (of course), but I don't have my camera cord to download my pics, so we'll have to wait until I get home to post some pics of Jaime's hospital stay. Jaime just fell asleep a little bit ago, so I, too am going to turn in. It was a busy day, Bev was up to visit late this afternoon and we had some of our old NICU friends visit (doctors and nurses), it was nice to see all of you! Being here is like the show "Cheers"....it stinks being in the hospital, but it makes it a whole lot easier...."where everybody knows your name....and they're always glad you came...." So, "Cheers" to yet another positive trip to the OR with our "friends"! :)