Coming to Duke was supposed to be a short visit…get to know the team here possibly place the port then be discharged home. It’s funny how God sometimes takes your time table, your plans and stomps them in the dirt. So our plans got stomped in the dirt.
As soon as we got to Duke I immediately missed Brenner. I missed the friendly faces we have come to know over these past 5 months. I missed those large private rooms where I only had to listen to Stella’s monitor beeping. I missed our family being so close. I even missed the heavy duty crib I initially thought was so institutional when I first saw it back in December. Stella was doing okay when we got here, some of her liver numbers showed some failure was starting. She was put on Vitamin K and that was about all the ‘liver specialists’ had to offer Stella in a way of management. They wanted to be clear that Stella was not a candidate for a new liver which we already knew. That’s not why we came here. I guess we came because we needed to hear someone say there isn’t anything to do when the liver starts to fail except to manage symptoms. We needed to know that we did what we could and took her to the best doctors that we could. The GI/liver doc advised to stop chasing the labs(which meant fewer blood draws) since no matter what the lab values showed the management would be the same. So they advised us against placing the port because it was an infection risk and her INR (ability to clot, for which the liver is responsible for) was high, she could have bleeding issues from the procedure.
Even though we know the liver is failing we were hopeful that the state of failure would kind of pause and not get worse. Through our stay Stella’s little belly would become distended and get kind of firm but still soft if that makes sense. We thought it was because of her feeds and maybe it was, like she had had too much and her belly was sticking out.
She did well through the weekend and we were working on getting her feeds under control which she continued to vomit. Since Duke wasn’t doing anything Brenner couldn’t we wanted to be transferred back to Brenner where they could continue to work on the feeding situation. We were set to head back Tuesday (yesterday) when Stella started showing signs of another metabolic crisis.
On Tuesday morning she was pretty out of it (which is a sign of a crisis) and the vomiting was increasing. Our nurse came in to check on her and took a blood pressure which was very low, she called for the rapid response team from the PICU. They came and assessed Stella and determined she needed to be in the PICU. She had no IV and she needed IV fluids…her blood sugar had dropped to 40. Since all her other sites were shot and she still doesn’t have the port they were able to get access in her neck. About 8 hours later the IV had come out of the vein so a central line had to be placed in her groin area.
This morning Stella’s little belly looked like a basketball. She has ascites which is where the fluid collects in the abdomen where it shouldn’t be causing the belly to distend, another symptom of liver failure. We are hoping to get her more comfortable… the PICU doc assured me that while she can’t do much about the whole picture she can do something about the ascites. She is being given albumin and lasix to help get the fluid off. So when we think she’s comfortable and has peed a lot they will transfer us back to Brenner where we will go to the PICU there.
I have cried a lot. We know that all of this isn’t good. We don’t know what or how long to expect. We do know that we love her more than I could begin to describe with words. And we will love on her and be right by her side till Jesus calls her home, be that in two days or two years. Stella has probably experienced more love by more people than most humans do their whole lives. I think that’s what most people search for… to be loved, really loved. So in those terms Stella has had quite the life!
So even though our plans got stomped in the dirt there is a positive in all of this. A lot of Jesse’s extended family lives near the Raleigh area. Most of them haven’t seen Stella since Christmas, right before she got sick. Most of those family members got to come see Stella which is a blessing! We also met some really awesome docs and nurses that took care of Stella while we were here. One or two we can call on if needed when we get back home.