Day 9 Post Transplant

Sorry about the delay in this post. We're still in the ICU due to the liquid overload in Luke's body. As you can remember, the day after the transplant surgery, they discovered a blockage in an artery and there was backflow of blood. This prompted the BP to drop and subsequently pumping about 900ml of liquid in a short time to stable the BP. Then they started aggressively removing liquids, which they did but BP started dropping again. Then for the 3rd time, last Friday they saw a BP drop but was quickly gotten under control with about 350cc of liquids, mostly thick Albumin, which helps pulling the water off of tissues into the veins. Since then, things are fairly stable and we are praying that Luke’s body starts accepting the fluid shifts and starts excreting liquids. So, there is no set goal by the drs., but they are letting Luke handle the liquids in his own time but giving him Lasix to gently push the liquids off through urine.

It’s been an experience spending nights at ICU. The bells and alarms through the night, and army of nurses running from one room to another addressing the emergencies. It could be overwhelming experience, but my prayer has been “God, please let your peace be in me.” However, I’ve had my share of anxious moments with all the alarms and frequent reports. I found out how weak and desperate I could be. As a parent, it is tough to see your baby go through these times and I must admit I came close to asking “my God, my God, why have you forsaken me.” But my walk with God has taught me that times like this is where God shows up – exhausted and almost at the end of our human road! It amazes me how he shows up. In the last 4 months, Jen and I have leaned on Him more than anytime before in our marriage and He has never forsaken us, He has always come through – not in our time but His own!

Talking about the last 9 days in the ICU, I’ve participated in the daily drs rounds and have become somewhat proficient at how they handle Luke’s care here. I’ve asked so many questions and watched the nurses care for Luke. It is very scary when you see even the best nurses make mistakes. I remember reading a blog from a fellow parent, who went through a similar experience to what we are going through, and what she said about care at the hospital…”you are your son’s only fulltime nurse.” I’ve come to experience the profound truth in that statement and why I need to pray for the medical staff. All my questions may seem like I’m too curious or that I’m undermining their expertise, but Luke’s my 24/7 and only patient and most of all God has placed me to care for him while I’m on earth, so I’ll do what I have to do.

This is where I take over. (Jen) I just relieved Ben at the hospital and he didn’t quite get to finish what he was saying, but I think I can finish it for him. God is so faithful and has really taught us to trust in him alone. Ben is so awesome, he has stayed at the hospital every night for the last 9 days, and he plans to stay every night until he is out of the ICU. It has given me some time with Levi at home in the evenings and a proper bed to sleep in. We are hoping to be out of the ICU by Tuesday. Please pray the extra fluids leave his body, especially the lung area. I’ll try to do better at keeping you posted.