Sunday, January 18, 2009

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!

No comments:

Post a Comment