Gold Star Day?!?!?

Jaime's day was filled with abnormalities. Elevated heart rate, vent settings, temperature, Co2, and he was metabolically unstable. His electrolytes are off and he's been all around miserable. This pic shows exactly how miserable he was! :-(
He had several chest x-rays and blood gases today...the next ones being due at 8:00 P.M. tonight. So far, the x-rays haven't changed, but Jaime's abg's are all over the place. He also had an echo cardiogram and a chest ultra sound...neither of which produced too much "excitement" for the drs. He had lots of blood work and cultures taken, too. When I left, we didn't have results yet, but he was put back on his antibiotics just in case something was brewing.
He is on diuretics to clear the fluid from his body. From what I understand they are both helping and hindering him at the same time. Once one problem is fixed, another occurs. It's all very confusing and poor Jaime's body is trying to work the issues out on his own, but he needs a little help with this. His TPN's need to be adjusted to correlate with his blood results. The drs. and nurses are trying to figure out exactly what "formula" of medications and TPN's works best for Jaime. In the meantime, Jaime is more sedated. He's been trying to fight his vent all day, too. Yep, that's a whole different issue that's not really helping with his blood gases. Hopefully he'll rest the next day or so until he stables out again.
His breast milk feedings have been stopped for the moment, though they weren't really going as horrible as I thought. He hardly had any reflux like most CDH babies do. When they stopped the feed, they checked his belly for milk retention and very little was found. So, we know the digestive track is working. Oh and he did finally poop last night, too! YEA!!!

Dermatology came to check on Jaime, they said he's doing great! He does not have any blisters on him and hasn't since they took all adhesives off of him. He doesn't need to have dressing changes anymore, just some Aquaphor on his feet, ankles and hands and cover him with socks and mittens. The EB results will not be back until late this week, early next. His skin is awesome, with luck the EB will come back negative, if not, it is an extremely mild form with blisters only happening with adhesives.
As for his hemophilia, it's very well controlled. He's still getting Factor twice a day, but that's only for 4 more days. After that, he'll get Factor once a day unless he has a procedure requiring more. Dr. Gruppo came to peek on Jaime yesterday and is very pleased with how things are going with his hemophilia.

So, having said all of that, it WAS a "Gold Star Day," just not for Jaime. Per Dr. Frischer Carter, gets the CDH patient Gold Star Day Award. Even N.N. Jan told Carrie that SHE gets a gold star. Well, we are in the same Pod with the same drs. somebody needs a gold star day...I guess we can let the Adler's have a turn...LOL! Dr. Frischer did tell Jaime that if he behaves, he can have one, too. Let's pray for a "Gold Star" Tuesday for BOTH boys! :-)

OK, on to some fun Jared news. He got to go to the library in downtown Cincinnati today. The pic is of him playing on one of the computers there. He loved it. Apparently it's HUGE! He also got to meet a few Zoo Animals here at the house tonight. He got to pet a chinchilla, dove and an alligator. He even got to make a bird mask. There are so many people staying at RMH with the new wing opened, so there are more kids floating around. Jared has been getting more involved with the house activities. Over the weekend, there was an Opera performance, it was great. Last week there was a ballet performance, Jared really liked that, too. He's even been participating in the craft projects. We're happy to see him getting so involved.

Well, I'm off to the hospital to find out what the 8 o'clock tests showed.
Have a nice night.

Love,
Sheryl