Are we sure we're not in Cincy?

Today was such a busy day...one of those days we used to have in the RCNIC in Cincinnati. I sort of felt like we were back there...minus the team, nurses and the Adlers! :-(

Here's what happened today...Jaime decided he didn't want to eat...his total intake for the day was 7 oz. Of course, this meant his output was next to nothing.
There was some contemplation in the middle of the night about starting IV fluids, but then he was to have his swallow evaluation this afternoon, so they held off.
We had lots of drs. in and out this morning...unfortunately here...unlike Cincy, there are plenty of residents and students floating about. I'm not overly fond of this, but as a former UH employee, I can appreciate the fact that UH is a teaching hospital. As we all know, Jaime is one heck of a great teaching patient, too. Anyway, there was much discussion as to what to do from here. Some things tossed around were IV fluids, NG, continuous feeds, Reglan, steroids...unfortunately there was NO talk of us going home. :-( Most of the plan was contingent upon the results of the barium swallow.
Anyway, Jaime was kind of quiet and not himself this morning...then he had his barium swallow this afternoon. It was really neat...this was actually one test I've never seen before. Jaime had to drink several thicknesses of barium to see if he would be at risk for aspirating (swallowing milk into his windpipe, thus going into his lungs). After trying all of the thicken barium samples, it was decided that Jaime indeed is at a great risk for aspiration unless his food is thickened. I sort of knew this was coming, he has a tendency to choke on his food/bottles and is not real coordinated with suck, swallow, breathe. This is NOT related to his newest illness, just something that needed to be looked at before we went home with this horrific "barky" cough Jaime has. So, as of today, Jaime will now have all of his bottles thickened with a honey-like substance called "thick it." This is typically something the elderly people have to have when they have swallowing issues. Jaime will be re-evaluated in 3 to 4 months to see where he is then. Now, the problem with the thickened formula means that Jaime will have to work harder to suck, swallow, breathe. Having said that, Jaime will be burning even MORE calories just to eat. (Side bar: Jaime is down almost 1 pound since being admitted). So, the NG was reinserted. Jaime must have a total intake between 650 and 750...he's barely 1/2 way there. :-( We HATE to have that stupid NG, especially since, when he's feeling well, he eats good. We don't know how long he will need the NG, but the drs. are thinking it's not going away for a while! They are contemplating continuous night time feeds on the pump, but nothing has been decided for sure. the bottom line is that Jaime needs to grow...he's even underweight for his adjusted age. Cincy wanted the NG in last week. I imagine rounds will be pretty eventful tomorrow.
Other new news, Jaime has an IV again. He had to get Factor for his Hemophilia...the only way to administer it is through an IV. Let me just say that Mr. Jaime is all too familiar with the hospital setting, he did not cry, wince or make even one move when the nurse inserted the IV. He did cry when Carly (his nurse for the last 2 days) and I inserted his NG, he even turned blueish from crying...his O2 went back up to 1 1/2 liters to get him back to base. Though, even still, he didn't fight it...it was put in rather quickly and easily.
Tom brought Jared up after school. Jared had swim lessons at the YMCA tonight. I miss hanging out with Jared and I needed a break (I've been here since Sat.), so I took him. Jared did really good today...those lessons sure tire him out. Then, we had "Special Treat Dinner." We do this maybe once in a while, but only when Daddy is not home. We went to Mr. Hero. Tom and I don't let Jared get chicken and fries...he can only get one or the other. Tonight, he had both AND a smoothie. After dinner it was back to the hospital. (It was a nice break, but not long enough...and I would have rather had Jaime with me!)
Here's the up and coming next Michael Phelps! :-)


Anyway, while we were gone, Tom managed to get Jaime to drink an entire bottle with his "thick it." He didn't choke once. Gosh darn it, that stuff may really have been just what he needed.

Jaime is currently asleep and the boys went home. Jaime's nurse is Michelle (my old schoolmate) again. Actually she swapped assignments with a different nurse! I'm glad, she's really great!
That's about it. Here are some pics I took today.

1) Taken late last night.


2) Morning nap in Mommy's bed.


3) Masked baby on the way to Radiology.


4) Barium swallow set up.


5) O.T. Cheryl (in the rainbow "dress") getting ready to start the feeds. Aren't their lead "dresses" cute?


6) Who's that baby looking in the mirror?


7) Barium swallow + IV + NG = Sleepy Jaime!