3/16 Update about Brandon

Time for an update about Brandon!

We have been on a roller coaster since our last update. I don't really even know where to begin, so here goes.

About a month ago Brandon had a biopsy on the new kidney. We got a call a few days later that there were boarder line indications of rejection. That was a heart plummeting, terrifying call. We were told to head right to the hospital for a 3 day IV Prednisone treatment, the standard anti-rejection protocol. Bran and I had a very peaceful and wonderful weekend in the hospital together! I know that may sound strange. When I surrender to a situation as being beyond my control, and decide it's going to be a blessing...IT IS. It's really that simple. I told myself that he and I were going to have a weekend to play board games, Uno, chess, watch movies, laugh a lot, connect with all our nurse friends, do crafts, play video games. And that is exactly what we did, and it was great. We were happy to head home on Sunday afternoon, but it was a really pleasant weekend nonetheless.

When I got the call about the rejection, part of what made it such a shock was that we'd had some rather unexpected and seemingly miraculous recovery. When Bran had the transplant, his creatinine (kidney function) was at 9. After many weeks it went down to 5, moving in the right direction. The lower the number, the better. We were at 5 and 5.2 for quite some time, and then inexplicably the number went to 3.1. By the reaction of the doctors and nurses at the Transplant Center, we realized the drop from 4.5 to 3.1 in one week was a VERY big deal. Everyone was ecstatic about this lab result. We had two weeks of the creatinine being 3.1.

After 2 wks of incredible recovery, we had a major set-back. Now, we don't know what really transpired on the other side of this story, we only know what was happening on our end. We showed up for Brandon's Plasmapharesis treatment (they separate the plasma from his blood and discard it, replacing it with clean plasma), and the nurses said they'd been trying to reach someone at the transplant center to get a renewal on the order to continue the treatments. The previous order had run out with our last treatment apparently, without a new one arriving. We had been told by our transplant surgeon and nurse that these treatments were obviously working and would continue until Brandon no longer needed them. We knew this was not that time and that no decision had been made to discontinue such critical treatment for lessening the impact of his disease on the new kidney, etc. Our Pharesis nurses had been calling our coordinator and leaving messages, we called several times...no one picked up, no one returned the voice mails that had been left. They couldn't legally give Bran his treatment, so we went home trusting that all would be rectified before we showed up for another treatment, 2 days later. Once again, Bran had his early morning dialysis treatment, then off to hospital for the Plasmapharesis. The nurses were very upset to tell us when we walked in that they'd been calling the transplant folks over and over and over, for 3 days...and not one call back or acknowledgement of the request for an updated order. We started calling on our cell phone again too, from the Pharesis room, leaving messages that were clearly urgent...no one was picking up the phone, no call backs. It is Friday, so we headed home very concerned. By Saturday, after much conversation, Matt and I decide to try and reach someone through the weekend emergency number at the transplant center. We were really worried that we'd show up on Monday morning and discover that there was STILL no order for treatment and that Brandon would miss it for a 3rd time. I reached the nurse on call (not someone we know) and told her all that had transpired. She was aghast, to say the least, and reached out immediately to the actual transplant surgeon! Long story short, the surgeon met me at the transplant center on the following Thursday morning when we arrived for our clinic appointment, to tell me that she'd come in that Monday morning and called the whole team together...and that THIS WOULD NEVER HAPPEN AGAIN. I could tell that something major had gone down. Our coordinator came in with a very humble apology, saying there was nothing she could say but that she was very sorry and it wouldn't happen again. Shortly thereafter we received the news that Brandon's kidney function had gone from 3.1 all the way back to 5. We lost a lot of recovery, and we knew it was because Brandon hadn't received the treatments 2 times in a row. No one was saying that of course, but we knew. Matt and I were devastated, quite honestly. It was a huge blow. Brandon then had the kidney biopsy...and the results were boarder line rejection. As you can see...this was a terrible error that had some pretty big ramifications. This experience did a number on me for a little while. I was so angry, I'm talking ANGRY...it made me feel sick to my stomach. I could have punched someone in the face when we got the creatinine results. And when that boarder line biopsy came back...no words. I am not a person who experiences a lot of anger. But for about a week I really couldn't see straight, and was praying all day long to surrender and let go of my anger. I was walking around acting normal, but inside I was just sick at heart. I could barely look at our nurse coordinator when we went in for clinical next, I was still so devastated. You have to understand...these people are the most critical medical support we have to keep our boy alive. Literally, we can't do this without them. To have the people we were trusting with everything, every aspect of Brandon's transplant and recovery, to fail us in such a huge way...it rocked me to the core. As he always does, God worked on me and helped me recover my emotional balance...but it took a minute.

That all happened 3 wks ago, and last Thursday Brandon went in for another biopsy. His creatinine was down to 4.2 with the last result we had. Thank God it's improved from 5.0.

I just received a call a little while ago that the newest kidney biopsy shows signs of boarder line rejection. Because it's early in the week, we can go each afternoon to the out-patient department in Pediatrics and Bran will get an IV treatment of Prednisone again to try and stop the progression of rejection. We'll be in New Brunswick all day tomorrow, late afternoon Thursday, and all day Friday.

On a happier note, yesterday was Brandon's last day of "confinement", as we've been calling it. Three months of recovery in the house after transplant, and now he can be outside, have some cautious visits with friends (still vulnerable to sick germs), eventually get back to church, etc. He is beside himself with joy. He's been counting down the days for the last month! To celebrate, he and Briana and I went for a walk from our home to our downtown, our first since his transplant. It was amazing to have him out and in the sunshine, strolling and window shopping, and enjoying the gorgeous, fresh air. He and Bri are out front on their bikes, having a gentle little bike ride on our street. I can hear them laughing and talking as they glide by the front of the house. Praise be God!

We ask for continued prayers for this amazing boy, for our loving, brave daughter, Briana...for Matt and I. We have not lost one iota of trust that God is, indeed, healing Brandon. We do not know how or when the healing will be complete. We are grateful for all the HUGE blessings in this experience and journey that we are having as a family. We thank God every day for Brandon's healing, and we ask that you do the same. Prayer can move mountains, people!