9am-11am Saturday ... amazing how fast things can change

From 9-11am here's what has happened. The Echo lady showed up and did an echo on his heart. Didn't know that was ordered but due to his high CK levels, they did. Later today I should have a visit from the cardiologist I'm told.
Then another Doc from the GI team came in. This is Dr. Cuenca, the one who is highly recommended by other moms who have terminal kids. They say people either love or hate her. So far, she was matter of fact, right to the point. Love that. She told me that the GI was normal (she didn't know I knew that already). And told me the Motility study showed "marked decrease" (which we knew). But I asked her what the percentage was. 45-50% of the milk should have emptied in 1 hour. I was told before that it was less than 25% but today I asked for the exact percentage. She said, "It was so low they couldn't calculate it." (Ugh ... makes me even madder at the old GI and at myself for not firing him sooner!)

Anyway ... she also recommended switching to a JG tube to bypass the stomach altogether (Just like my dear friend Angela said MONTHS ago! I should send her bill to the ex GI.) For those not familiar ... a G tube goes straight into the stomach. A JG tube goes around the stomach in to the jejunum.

They want to do it immediately, as soon as they have the tube in. I asked about the scope that was scheduled on Monday. She said she wasn't aware of it, that maybe it had been cancelled due to all this but she'll look into it. But she said that while they put in the tube they will scope him at the same time so he's only under once.  Should be a fast, relatively easy procedure. 

In the meantime, they are switching him to another type of bag that has a venting system built in.  During the motility study, he did retch and reflux a bit so they just want to help make him more comfortable while we wait for the surgery. That way he is constantly vented and if he refluxes, it will go into the bag, not his throat.

They are also concerned about the high fever. They're working quickly to find the source.

Finally, she asked if I would like to have a Hospitalist in charge of his case. Right now, it's being "piece-mealed" which basically makes ME the coordinator and no one is really in charge. Then she said it would be Dr. Cartaya if I wanted one. Well ... some of you have been following only recently and some have been following for a long time. For the long timers, you might remember that name or at least that doctor. He was our main doctor back in mid May 2010 (if you want to go back and read those blogs). 

This is the doctor who helped diagnose Manny.  He was a huge advocate for him.  He went to bat for this baby more than once.  We got a lot of answers and help because of him.  He helped us with the whole DNR thing, setting up hospice, etc.  LOVE that guy!

When we signed out of the hospital, he cried (not bawling, but tears in his eyes).  As we hugged (yes, that's right), I said, "I have a feeling you won't forget us."  He said he wouldn't.  And then we haven't seen him since. 

So of course I said YES.   He called while Dr. Cuenca was in the room and said he would take the case.  I think he will be shocked it is "us".  (Last time we were here, Manny wasn't adopted yet so he had a different name so he has no clue who he just took on.)  Can't wait to see him.  I will feel a huge relief that HE is in charge of the whole plan of care while we're here. 

While the news is not great still, I'm hopeful to have a great team on board finally!