You know you've been in the NICU too long when you call the front desk and the conversation goes as follows:
"NICU this is ____"
"Hi ____ it's Shannon Aguilar."
"Hey Shannon, how are you?"
"Doing well. How about you?"
"Great. Did you want to speak with Gabe's nurse?"
When all of the NICU staff know you and your child by first name, it's time to go home! Most babies around the NICU are known by "Baby" and then whatever their last name is. For example, Gabe would be "Baby Aguilar." But that is not the case with us. Not only is G called by his first name but everyone calls him "Gabe" and not "Gabriel." A couple of the nurses even call him "Bubba," which is my nickname for Gabe. After 106 days (yes, that is how old Gabe is) in the NICU, and no signs of going home anytime soon, I think it's safe to say we have become somewhat of a permanent fixture there. Kind of like, you can expect to see several things when you visit the LPCH NICU: babies, doctors, nurses, and the Aguilars. In the words of The Beach Boys' "Sloop John B:" "...I feel so broke up I wanna go home, let me go home...this is the worst trip I've ever been on...why don't you let me go home."
In yesterday's blog I reported there wasn't much out of G's chest tubes. Apparently I spoke to soon because over night he dumped quite a bit. Bringing his daily total, for yesterday, to over 100mls. Grrrrr! I just spoke with Nurse "C" and so far today there hasn't been much, but we'll see what happens as the day/night progresses. I'm not getting excited about diminished chest tube output anymore until we go at least a week or more with big changes. They spent all day yesterday trying to lower Gabe's potassium levels and it was successful. Too successful actually, becuase they got too low and are now having to bring them back up. Gabe's hematocrit (red blood cells) level was too low this morning as well, so he has already received one "dose" of packed red blood cells (blood transfusion) and may require another tonight. Regardless of these issues, Gabe as been sitting comfortably all day, and has been a very good boy for Nurse "C." They have been able to make some changes to his vent settings, and so far he is tollerating the changes.
For, oh probably 106 days now, I have been asking if Gabe's large tumor filled liver could be the cause of the Chylothorax and/or other issues he battles with. It's so large that it is displacing his intestines to the left side and pushing up on his diaphram. It makes sense to me that it could be causing pressure somewhere on the lymphatic system causing a leak or maybe even a blockage, which has caused the fluid to find an alternate route (leaking out) around. Even though this makes perfect sense to me, I have been told that on a "pathophysiological level" this would not make sense. Enter Dr "H" who just cannot get this large tumor filled liver off her mind, and is on the same page as me (in the sense that these masses must have a bigger role in Gabe and his health then we think/assume). Yes, she agrees that on a pathophysiological level the large liver would not be causing Gabe's issues, but then again, who's to say it isn't? She is currently arranging for an MRI of the abdomen that will focus on the liver and the masses. The goal is to collect as much information as possible regarding these masses and his liver and not write it off as a culprit until we know everything about them; exactly how big the masses are and what exactly they are pushing against. Thank you Dr "H"!!!!!!!!!!!
At this point Gabe has hit a wall. His chylous effusions don't seem to be getting any better, and he cannot live with them. His lungs cannot get better (if they even have the ability to get better) with the effusions, and he cannot live without healthy functioning lungs. Quite honestly, I feel that many days/weeks are spent maintaining Gabe. Don't get me wrong, this in itself is a huge all-consuming-mind-racking task, but if we don't dig deeper and learn everything we possibly can about Gabe and his body, then we can't help him move forward through this wall he is now up against. I am very excited about Gabe's upcoming MRI and the more indepth research of his liver and the masses.
We are extremely appreciative of all of the Doctors, Nurses, and everyone else involved with Gabe, for taking such great care of him, and putting so much of their heart and soul into trying to figure out our little mystery man. Becuase of these amazing people, our son has been given a fighting chance at life.