Staying the course

The wide angle lens story is that Eli’s condition is still the same. We’re still just waiting for him to be weaned off some of his drugs, and rid is body of all the excess fluid.

This has been the primary concern as of late, his edema. His body isn’t transporting the fluids from out of the tissues, into the bloodstream, to be exported out. He was on diuretics, but those only work on kidneys, and this fluid isn’t being transported to the kidneys. As a result, his organs were “drying out” and his tissues weren’t. The diuretics have since been stopped.

Now there are new concerns of potential NEC. NEC is inflammation of the bowels, and can result in tissue die off in that area when the inflammation restricts blood flow. If caught early, simple proactive antibiotics can control any potential issues. In an effort to stay in front of any potential problems, Eli is being X-rayed every 6-8 hours so they can catch it before it starts. They’re also giving him more of the portion of the blood that is supposed to transport these excess fluids out of the body. The doctors’ concerns are not yet severe, just noted.
It has been expected that Eli would stay in the ICU for 2-4 weeks after surgery. It is becoming clear, and confirmed by the nursing staff, he’s going to be on the long end of this expectation. His fluids need to get out his body, then he can be fed milk (the feeding tube has already been inserted, they’re just waiting to be able to use it), then we can start cutting out some of his drugs, get him off the respirator, and start thinking about getting out of the ICU and into regular care, where we can begin teaching him how to eat (this will be a whole new battle, when that time comes), and eventually get him home.

We met Dr.Francis yesterday, another of the cardiology team. He went on to tell about his 8-year-old nephew who was born with HLHS. Dr MacDonald was his surgeon, as well. Dr. Francis went on to tell us how his nephew runs and plays with all the other kids, and you could never tell him apart from them. I asked him about the stat I saw a while back that said only 60% of HLHS kids make it to the age of 5. He said (paraphrased), “I would say it’s significantly better than that now. That’s 5 year old data, taken from kids who had surgery 5 years previous to that. So, effectively, you’re looking at 10 year old data on a procedure that’s only existed for 20 years. The advances we’ve made since then are huge. I remember, in my career, when we’d send these kids home and tell parents to love them while they still could, because there was nothing we could do to help them.”

Overall, we’re both discouraged and encouraged all at the same time. We’d like to see quicker healing progress, but it’s also encouraging to know that we’re in a constantly improving medical world, and HLHS isn’t nearly as gloomy as it used to be.

Please pray for Eli’s edema, that he begins eliminating his excess fluid.
Please pray for peace for Tanya and I. It’s difficult having no option but to wait and watch.