2 in 1 post!!!

To start, here are photos from yesterday (Thursday)!

Jaime has a new mobile on his radiant warmer.

Jaime after his "bath."

Our position....for hours on end!

It's after 1:00 A.M., I'm still sitting in Jaime's room, he's fighting really hard to sleep. Jaime did get circumcised today...it was quite the procedure. Dr. Tiao, Jaime's surgeon was the one who did it, he ended up turning it into a surgical procedure...he said it would be better cosmetically and bleed less the way he choose to do it. It looks good and so far no bleeding, he's even urinating OK...though I'm sure it's killing him. (Ouchy....poor guy!)
As for other things...both today and yesterday, he's been having lots of gunk suctioned from his ET tube, nose and mouth. One time yesterday, he jumped, coughed and had a brady/desat. He turned "ugly" very fast, but fortunately, there were enough people around in the halls to grab...no code was called. The rest of the day, Jaime (RN) kept suctioning Jaime (baby)....actually, this suctioning continued through today and tonight, too. His chest x-ray yesterday looked pretty bad, but today looked slightly better. I'm hoping that it will look even better tomorrow. They had gone way up on his Lasix (diuretics) to help alleviate all of that post-op fluid. Jaime was weighed today, he was 14.3lbs, we have no doubt that this is all fluid related. He was barely 13lbs going in to surgery and the only thing he's been receiving food-wise is TPN's and Lipids through his picc line.
One other big change is Jaime's Nitric Oxide (for his pulmonary hypertension) has been turned off this evening. This is HUGE! They charge you by the minute for the Nitric Oxide, crazy! Anyway, that's off and I'm sure they will be resuming the Sildenafil at some point after they do an echo. Jaime is still on the vent, but his settings are "slowly" getting weaned. His blood gases have been OK. Not perfect, but good enough. There was talk of extubating Jaime this weekend, but I'm not sure that will happen. He's still pretty sedated (in fact it took him 4 extra doses of medicine to get him to stop being so restless tonight), he won't be able to maintain with all of that medication. Of course, if he was extubated, we wouldn't have to "snow" him because he wouldn't have a tube down his throat to worry about. I don't know, we'll see...we need his lungs to be a bit more stable in my opinion.
In other news, Jaime's repogle still has lots of stuff coming from it. Yesterday it had blood coming through it all day. Which brings me to my next point...all day yesterday Jaime's Factor VIII levels were extremely low, even though he's receiving Factor every 8 hrs. Everyone is puzzled as to why this is happening...we have a few theories, but the hematologists still just shrug their shoulders. This morning I told them that I wasn't comfortable with his levels, especially post-op, they said they could go up on his dose and have him receive it every 6 hours if need be. Well, after a talk with the surgeon, the change was made.
Everyday, we're hearing more and more about how invasive Jaime's surgery really was. Today, Dr. Tiao told me that his kidney was way up near his right shoulder...along with the bowels all the way to the colon. He also explained that he had to make Jaime's incision larger than the first one because of how the liver was up and fused to his skin. It's very raw in that section and the greatest fear is it bleeding...apparently, Dr. Tiao relayed this to Hem/Occ today...hence the every 6hr. Factor change!
I think that's enough "medical" stuff for today...let's talk about "fun" stuff! Jaime (RN) made a point to get Jaime (baby) up and dressed in his Halloween costume today. It was sooooo cute! Actually, all of the babies celebrated Halloween today! They even got presents...get this, Jaime's present was blue turtle slippers, a stuffed turtle and a book. The babies also received cute little Halloween onesies, but I don't think Jaime will be able to wear his...yet! He's still so fragile, post-op. Jaime also received an award for having 100% "adorability" in his costume! He was a giraffe...it was fun to see him in it!
Oh, let me back track for a minute...yesterday, Jaime (RN) and I gave Jaime his first comfort bath post-op. He tolerated it well. He even had PT and OT yesterday...along with his CPT. He did well for the most part. I was told that I could hold him yesterday, I was sooooo excited, but when we repositioned his head, he didn't tolerate it, so I opted to wait. Fast forward to today...Jaime was paralyzed for his circ, so when it was done and his bed needed to be changed, I asked if I could hold him. I did for a couple of hours. We were laughing because when we held him as a newborn he was so small, but today, he was a giant blob! HA! I still loved being able to hold him...I think he did, too! :-)
We took LOTS of pics today! Enjoy the slide show!

OK, it's 2:08 A.M. Jaime has finally settled, so I'm going back to the house now!
Have a happy and safe Halloween!