New Pics as of 1/21 and on.

This is new pics of TJ. He always has that index finger and thumb together...... he's got the perfect eyes, mixed drk blue and specks of brown. the reason I sat him up was because PT asked me to.

TJ update 1/28/2008

So tj didn't get to come home yet. He got another infection in his chest this one much more minor. Cultures revealed that it was staph, just like the kind we carry on our skin but it had invaded his wound. They're treating it with a round of 4 weeks worth of Vancomycin (spelling>?)

TJ's dropped to somewhere around 10+lbs, but the last few days when I was there he was doing great. He'd been playing with me and playing with his daddy when Carlos was around, and just generally driving all the nurses crazy. He's become somewhat of an attention hog the last few days, and if he doesn't get the attention he wants he pouts and cries. It's horribly cute. :) They're now talking of TJ coming home in a week maybe two. He's still showing alot of oral aversions, however two days ago with me working with him thruought the day he got over his oral aversion at least for a while. I could stick a pacifier in his mouth without him gagging. But he'd just chew on it. Now that he's been off the ventilator for a while hes showing so much more of his personality~ He's been making good progress with physical therapy as well as Occupational therapy!

There's still a very good chance he will come home on an NG tube or even possibly a "kangaroo Pump". So, now I guess they're talking a week or so,. None of understands why they don't send him home if RSV is running around the hospital and he can be sent with a PICC line in place anywayse

Cindie

TJ update 1/18/2008~ TJ SHOULD BE GOING HOME THIS WEEK!!!!

Grandma Karen with TJ (my mom) TJ's doggie, Kratos, HUGE at 4 mo. 45lbs

TJ was making funny faces! and just LOOKING at us! and he kept looking at the monitors, I shouldve gotten pics of him straining for it. He was REALLY looking at it! (stretching his head WAY back to see it)

OK, here's whats going on. TJ was taken off of the vent mid week last week, and as of friday had gotten taken off CPAP after about a day and 1/2 on it. He's 11 lbs (i wrote he was 11 lbs before, but I misestimated, he was about 10 1/2 lbs)

Don't worry about all the tape and stuff, it's just to hold his oxygen and NG tube in and cover his wound. It's uncovered now! I only wanted to show how huge he's gotten!

He's a BIG boy. I've got pictures to add! anywayse... last night he was very upset and agitated, they thought he was going thru withdrawal from the pain meds still (morphine and adavan)

So they added a little pain killer to his meds (methadone)

He keeps spiking fevers, up to 104*F tonight, but it's only for short time periods. He's very environmental in the fact that when swaddled, even with a thin blanket he's prone to overheating (due to the skin problem) or if he gets agitated and mad.

Tonight, we were moving him around, his oxygen slipped off and his chin was to his chest for a couple seconds . his tongue poked out, it was blue so I thought they'd tried to get him some meds that had a funny color. It turns out that even though his face was normal his O2 was low and dipping abit. It came right back and his tongue pinked up right away.

They'll send him home on oxygen, but we've got that covered. he's got plenty of oxygen and everything he needs.

Due to being on the vent for so long he's developed an aversion somewhat so OT and PT are coming in monday to evaluate him and try nippling abit. Unfortunately I wont' see him til wed. when DH gets off. That's ok because I'll call every day and night.

Something cute to add: I had a little girl at the hospital today run up and hug my legs, out of nowhere... then her parents got her and she ran back again (2 yrs old) it was hilarious! she wanted me to pick her up, so I did and sat her next to her daddy ... I said 'say byby, I gotta go!!!" and she waved and kept grinning!

Also, TJ has a 10 month old in a bed next to him. I thought maybe the baby had D/S but it wasn't until I spoke to her parents (hispanic, mom spoke little english but dad was fluent)

They said," Yea, our son has down syndrome" and I replied, "really? My little guy has it too!! that's kind of cool!"

They told me that dad has a sister with down syndrome. I'm wondering if maybe there's a translocation going on. mainly because they did a genetic test on the baby but never said exactly what type of D/S baby had. just that he had it. He's totally cute, and HUGE OMG this kid is BIG. lol, He kept playing with his cords, his feet... everything. I am kind of happy TJ is only 5 mo old right now, because he's an easier baby at this age. If he were closer to a year, he'd need to be entertained a whole lot. (I could do it. it's easier than just sitting there watching him be on a vent or CPAP)

They don't know if he'll make it to my best friends wedding in march. we're hoping but if not my mom said she'd care for him while we're gone. (I may be in the wedding party... she asked for my measurements and all, but if she decides not to, it doesn't bother me. I'd be happy just to be there! she was here for mine after all)

They are speaking of him coming home on WEDNESDAY OR THURSDAY!!! It's great, but we've gotta make sure he's stable for it. They're also gonna do a hearing test either tomorrow or the day after, we're VERY excited to hear about this.

here's all the pics from lately!

TJ update 1/12/2008

OK so TJ weighed in at about 10lbs 12oz or so. He's looking great. they are talking about removing his wound vac On monday (today) and seeing how he does. they're also trying to get him off the vent. slowly.

He was asleep the whole time we were there, and one of the nurses had clipped his nails even tho it's against protocol. (I don't mind) we noticed when I brought clippers to clip his nails.

That's all that's new for now. Hopefully my next update will be better... (like they take the tube out of his throat! lol)

Cindie

Pics from yesterday.. (camera didn't delete them)

Look, He was grabbing and feeling on his bear!!!!!!!!!!!!!!!!!

These are all of TJ yesterday. He was mouthing the Felt banana peel of his Curious George even with the NG and breathing tubes in! it was so cute!

He held the nurses hand

Still with the banana. When I moved it he'd lick his tongue around and smack his mouth as best he could!

TJ update 1/06/2009, making lots of progress! (and his daddy and I's 6 yr anniversary!)

He's awake!!!!!!!!!

he's not uncomfortable with this tube too bad, just sleepy!

what a little porkey pie! He's tipping the scales at just about 11 lbs!

TJ's currently at a rate of 14 on the respirator and doing great with Sat's in the 90's. His wound is closed up past the bone, and tissue has covered the spot. They are debating on whether to stitch him up and send him home or what...... I hope they let him heal a bit more, then stitch him up!

sleepy baby..... He has LONG fingernails that I need to cut next time I see him

Here are the most recent pictures of TJ, and Us. I included one of Carlos and I's 6 year DATING anniversary!we count the dating one as well as the wedding..... We hit the town (movies and dinner). it was Me, Carlos, Jon(middle brother 18yrs old) and his girlfriend Amanda. Their first date and I thougth a nice way to treat them to something special! She's really Nice!

on to TJ, TJ has been feeling stuff and even with the Vent in he was trying to lick things! Including his curious George toy courtesy of the neighbor. He was grabbing his bear (reaching out to touch the fur... but for some reason those particular pics got deleted, darn it! my camera is set to delete pics after they're uploaded... for some reason it either didn't take a few pics or just didn't upload them!

I have asked the nurses to call me as soon as he's extubated and handling it because I want to feed him by mouth the first time! We only get a few months before he will be eating solids or cereal! He didn't have any teeth coming thru today even tho I thought he'd had some before.....

That's our update fro today!