How did we get so lucky? How did we manage to land in a job where the people you work with are real life angels. Especially to us and baby Stella. Those in this picture, and those not in the photo have shown us the love of Christ at every turn. They have visited, called, emailed, brought food, bought shirts, eaten spaghetti, taken over classes when Jesse had to suddenly leave, they’ve taken over art classes I had to leave behind for a semester and given me sick days just to list a few. This whole experience has been so humbling for all of us. Not only has our school supported us in so many ways, so has our entire community. Local community groups, churches, businesses and individuals all have made efforts to support us. There is even a skeet shooting event coming up cleverly named “Pullin’ for Stella”. So many people, those we know and even some we don’t have worked hard to raise money to help support us. Everyone, and I mean everyone that meets Stella falls for her. I don’t know how she does it. She’s brought so much happiness and joy to so many. I want to be more like Stella. I think that’s what she is teaching all of us…leave people happier than when you found ’em. So to all those angels out there in the green shirts, we see you, we love you, we appreciate you. How did we get so lucky?
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.
It has been so long since I’ve posted anything about Stella! We have been busy busy with managing her. We had a good stretch where Stella was doing fantastic! We have since experienced two hospital stays, the second one we are still in. The first ED visit was due to dehydration and constipation which caused her to experience a metabolic flair which means she was all out of wack, really sleepy and not responding to much. We have had trouble with vomiting for a couple months as well. We spent 6 days at Brenner getting her chemistries back under control, she had a long term EEG, and we were taken off the keto diet. A lot of changes happened during this stay but Stella bounced back to her baseline pretty quickly. When we left she was awake all day, responsive, smiling and jabbering. Every time we have been to the hospital our Peds team has been in touch with Dr. Parikh in Cleveland and being very careful in the way they manage her, to which we are so thankful!
We were home about two weeks when I noticed she was starting to decline in similar ways as before, sleepy and not real responsive. We took her to the ED at Brenner last Friday (5-11) where her chemistries were again out of wack. She was given an IV that helped correct some of those lab values. It took Stella a bit longer to bounce back this time but she has gotten back to her self. This time Stella’s liver obviously is showing signs of some dysfunction. Our team at Brenner felt like Stella was going to be best served at Duke because they have a metabolic team that deals with kids that have mitochondrial problems and there is a GI doc that specializes in the liver. So here we are…today we were given a ride by the Duke life flight crew in their big blue rig an hour and a half or so down the road to Duke. Stella is stable and okay this was just a way to get in with this team and see all the specialists we need to see in a fairly easy way. We absolutely love the team at Brenner and feel so comfortable every time we have to go. Coming to Duke is out of our comfort zone but we hope and pray that this is going to be what’s best for her.
While we are here Stella is going to have a port placed. She is EXTREMELY hard to get blood from or to start an IV. She has bee stuck at least 15 times just since last Friday. She has hospital stays in her future where routine blood work is going to be required so this seems the most compassionate thing to do for her. The procedure is fairly common and simple. However putting her under is always a scare thing given ALL her issues.
So if we were to ask for anything we would ask for prayers that this procedure goes well and that we have made the right decision for her. I don’t know exactly when it will be but will be soon. We also pray that the dysfunction in her liver (which we know is inevitable with Alpers) will hold where it is and not get any worse for a long long time. On a good note Stella got to see her Aunt Libby who works at Duke Eye Center! She hasn’t seen her since Christmas! Thank you for your prayers, they mean the world to us!