It’s probably obvious by now that I write when I need to work through emotions of the present situation. Well, I don’t need to this time. I can’t say that I’m not on my toes in preparation of something unforeseen, but I think Gabriel has finally been given a restful season.
Surgery this past Tuesday went well. Gabriel had the nissen fundoplication and gastrostomy tube placed. After the surgery was over, the surgeon didn’t come out to see me. In fact, I was left in the waiting room of the OR while my mom went back up to the NICU to see if Gabriel had been wheeled back to his room. I got a call two minutes later saying, “You need to come up here, the surgeon is waiting.” I met my mom in the hallway of the NICU and walked towards Gabriel’s room. I saw the surgeon talking with the doctor and two other people who are since a blur. I heard him say “liver”. Oh my God. The surgeon said the g tube and nissen went well, but he had to remove the piece of pancreatic tissue (remember, it’s rare but “shouldn’t ever cause a problem”?) on his stomach because it was in the way of the g tube. That part was okay…then he said Gabriel’s “liver looked really dark. It was soft, but dark, so I took a sample to send off for a biopsy.” If that wasn’t enough, he proceeded to tell me that there was a cloudy fluid in Gabriel’s abdomen, just floating around surrounding his organs. He took a sample of that too and sent it off for a cell count and culture.
Gabriel’s doctor explained to me that the fluid is called an ascites and was probably there because of the damage to his liver from the IV nutrition. If you’ve read further back into my blog, Gabe’s liver was really sick, but after a week’s scare the bilirubin and liver enzymes were on a downward trend. That night after surgery I looked up “ascites”…80% of cases of ascites occur because of a severely diseased liver or liver failure…
I’m having difficulty describing what hearing about this was like. I just couldn’t get beyond the possibility of liver failure. I sobbed and sobbed and looked at Gabriel and wondered: is this the beginning of the end? Am I gonna lose my baby? I cried for two days.
On Thursday the pathology report of the ascites came back with nothing remarkable, they knew it was there from his liver. Then the biopsy report: mild changes to his liver – his liver is making blood cells (pretty typical with Trisomy 21), the liver ducts are inflamed but not abnormal, and mild fibrosis BUT no bridging (fibrosis: scarring tissue in the liver; bridging: connective scarring tissue associated with end-stage liver disease). Basically, as long as Gabriel’s liver enzymes continue to drop, he’ll be fine. His doctors don’t think he’ll have any problems with his liver as he gets older, but we will need to see a specialist once he’s discharged.
As for Gabriel’s recovery, his ventilator settings had to be turned up the first two days, but he’s done really well since then! He was on the ventilator for five days and then extubated to high flow nasal cannula at 4 L! That’s what he was on before surgery. Yesterday his flow was turned down to 3 L…and he hasn’t needed oxygen! He’s on 21% oxygen (which is what you and I breath). Gabriel is back in his big boy crib, his g tube site looks great, the nissen incision hasn’t shown any problems, and he’s bored! That’s a very good sign: he’s bored and wants to come home. The nurses are telling me we may be home in the next two weeks, but the doctor is alluding to it taking longer than I think (probably so that I don’t get my hopes up). His body will tell us when he’s able to come home…and he’s heading there fast!!