Anyway, LOTS has happened since my last update! Jaime is on track to get his ear tubes placed next Monday. I still haven't heard if anything else will be done or not, but the tubes will be done for sure. The doctor is admitting him as an observation patient with the intentions of sending Jaime home, but have a bed ready...just in case!
We met with anesthesia and hematology on Friday. Jaime is SOOOOO over doctors. I imagine all CDHer's (or chronically ill children) get that way. Well, Mr. Jaime has hit this mark. He cries the minute we pull into the driveway at CCF or when we stroll into the office waiting room. He's suspicious when we get into elevators, too. He's fine in the exam room, that is until someone starts touching him...then it's pretty much kicking and fussing from there. Having said that...you can imagine how things went when Jaime had to have his pre-op labs done! It took 3 of us to "control" him. The first (yes, I said, first) line when in just fine...but with his fighting and twisting..it was lost. He was hysterical, he even threw up between the IV's. Next was line #2...it truly was like sucking blood from a turnip. I was covered in snot and vomit by the time we left there, he was hot sweaty and had 2 IV sites bleeding. It was AWFUL! I fell horrible for him when he has to go through that. If he wasn't pre-op, I think I would have vetoed his labs! It will be my goal to eliminate pokes as much as possible in the future. I told them this time that they get only 2 tries...and that was it. Jaime fell asleep the minute he got into his car seat.
Now not to end that visit on a bad note...Jaime was weighed and measured...we had the BEST "growth" ever! :) Jaime is 23.1 lbs and 31.5 in. He's just over 10% for weight and he's around 20% for height (for his adjusted age)...he still wouldn't be on the charts for his "real" age which is 19 months old TODAY! :) I was very happy about this! See, we DO have great things happen, too! :)
Now other crazy stuff going on...Jaime's back to throwing up every night again. I just can't seem to get him to take his Prevacid routinely. He either spits it out or scoops it out of his mouth before it dissolves. The drs. are all aware of this...we're due to see GI on Dec. 2, so, hopefully she will change things for him. Cleaning up vomit all of the time is just gross, not to mention he's a mess, his tummy hurts and it takes a while for him to recover from a respiratory stand point. He turns very gray or blue during one of his gagging spells. It's not pretty! :(
In other news...looks like we will be adding an orthopaedic dr. to our list. Jaime's left leg is shorter than his right which is causing him to have a weird rotation in the hip area. At the very least, we need to have someone monitoring this to avoid future issues...especially any involving joints...a joint bleed would be awful for him.
Speaking of ortho stuff....Jaime got his new thumb splint. He tolerates it very well. We're not seeing a huge difference yet, but I think we will in time. As for his AFO's...well, those aren't working out all that well. They fit just fine and Jaime tolerates them, but here's the problem...being the lovely little hemophiliac that he is...the AFO's are bruising the heck out of his legs. He's getting big bruised welts on the back on his thighs from the belt hinge and bruises on his shins from the front piece. We are going to the orthotics store today to see if there is anything they can do to change this. Oh...and these bruises are just from a few hours of wearing the braces...so imagine what would happen if he was wearing them all day?!? Anyway, if they can't make adjustments to them, then I'm going to make the executive decision not to use them. If they can, then we are going to get special shoes made to fit them, as well. The ones I bought are OK, but not the best.
And a final note...in typical "Trost fashion" Jaime is sick...again! Both he and Jared have colds. I don't know how or if this will effect his surgery scheduled for Monday or not! We'll see. I have a call into the ENT just to let them know of these latest developments.
Our little aspiring musician! :)
Little Chef, playing with Jared's old kitchen!
So, that's about all for an update! I will try to update later in the week if I can! We're nearing the end of our senior project, so I may actually be getting my time back in a few weeks!P.S. BEST NEWS OF ALL...Jaime WILL be getting Synagis shots again...got our first dose of the season delivered today with it being administered later this week...pending any fevers from his respiratory illness~
Keeping Mr. Jaime in my prayers, that his cold goes away soon so he can still have surgery on Monday.
ReplyDeleteHow can he be 23 pounds? Owen is 26.5 and he is 3 1/2 years old and hasn't had nearly the GI issues as Jaime, way to go BIG BOY!!
darcy
It is so sad how they are so traumatized just by going in to the doctors. Katie does the same thing and it upsets me too! She even did this the other day when we went to get family pictures made. I was changing her diaper while we were waiting and she was wimpering and saying "no boo-boo mommy" It broke my heart!
ReplyDeleteHugs to you all!
Beth