Back to the beginning

I don't even know where to begin. I feel like a broken record. Unfortunately, Conley was rushed to the OR for surgery yesterday afternoon due to bleeding in his belly. The bleeding was different than last time because it wouldn't stop. It is believed that the anticoagulants that Conley needed for the clot in his chest is what caused the bleeding. There was no specific site of bleeding like last time when the mass ruptured, and it was more of a oozing that was occurring in multiple sites that had recently been operated on. Our surgeon said this is the window of time that they typically see bleeding, particularly in adults that have had liver transplants, and since Conley did not have any bleeding immediately post-op, than its only safe to assume the anticoagulants started the bleed.

Conley's presentation this time around was very different. Instead of being lethargic and weak, he was very uncomfortable, inconsolable and in pain. His tummy had grown significantly in a short period of time since it was filling with blood. They tried everything they could with pain management given his kidney problems and his inability to eliminate medication. This was torture for both Jonathan and I as we literally were forced to watch him struggle for several hours despite dose after dose of pain medication.

The first method they tried was reversing the effects of the anticoagulants by giving him more blood and clotting factors, and waiting to see if the bleeding stopped. They told us we were going to wait 4 hours to see...do you know how long 4 hours is to a parent when they are watching all of this happen. I demanded to talk to a surgeon because the nurses kept telling me "I can't answer that question." And I finally said, "then get me someone who can." Waiting and waiting, being patient and all this crap to see what will happen. It infuriates me, especially when you can't control his pain or comfort level.

Finally, the surgeon came in and realized that the medication to reverse the effects of the anticoagulants were not working, and decided to take him to surgery. Surgery went well as they packed him stomach with gauze to stop the bleeding. They left his tummy exposed with a sterile sponge in place to prevent infection. He will be sedated and intubated until he goes back to surgery on Tuesday (his 1st birthday) to check to bleeding and hopefully close up his tummy.

Our surgeon made it clear that this was definitely a huge setback, although not unexpected. However, he said that Conley is in a much better place than he was right before surgery. Seems to me we are right back at the beginning. He's pumped full of pain medication and back in the ICU with hourly stimulation. They told me not to touch him because he's been sensitive to stimulation. Really? I've told you that for weeks and no one listens. In fact, they do the opposite and tell me they have to touch him. Well, so do I.

Moving forward this creates issues for Conley now that he cannot have the anticoagulants due to risk of bleeding, but he needs them for the clot that's formed in his upper chest. Our surgeon said that's the risk we have to take, and lesser of the two evils at this point.

Back to the grind I go to advocate and protect this pumpkin, now that I know exactly what could happen with sleep deprivation in an infant. I've had many momentarily lapses of being done, and exhausted, and just not wanting to endure this anymore. But then I think of how hard Conley is fighting, and it's only fair to him that I keep fighting as well. Back to the guard post I go.