Sometimes things just suck. A lot.

Well, to say things have been hard would be an understatement. Conley's catheter was too clotted to be fixed by noninvasive measures, so he went to surgery yesterday to have it replaced. Luckily, the surgery went well and his catheter is working great. But, other complications have come up. Conley came back from surgery too sick to do regular hemodialysis given that his blood pressures were low and he was very sedated, so the doctor made a decision to do CRT, which is basically continuous dialysis for patients who are critically ill. He will be on this type of dialysis for several days. So far, he's done well and they hope to transition him to regular hemodialysis in a few days. One thing checked off the list.

Since starting hemodialysis, it appears that Conley has formed a large clot in one of his major vessels that circulates blood to other organs, specifically his heart. No one knows why he is clotting so late after surgery, and there really is no game plan yet until he receives an ultrasound, which we are waiting on as I write this. Yes, more waiting. It apparently is rare that he is still clotting despite receiving a blood thinner. I'm trying not to think of what could happen if the clot does not clear, because we've learned that "what ifs" are not helpful. I wish he could just get a break.

In addition, as you know, Conley's surgery on Friday was to remove the cancerous liver tumor. The surgeon said that he was able to successfully remove enough margins; however, the biopsy and pathology report on the mass should that it was a type of hepatoblastoma that required chemotherapy. (Mind you therr are two types, and one does not require chemo). So, add that to the list. At some point before he is discharged, he will start chemotherapy with hopes to transition to once a week outpatient chemotherapy. But obviously all of this has been put on the back burner for now.

Conley seems comfortable overall, and is less sedated. He's been more alert at times when daddy and I are around, so we have been able to interact with him. He is slowly transitioning off of the epidural from surgery, so he's having mild involuntary tremors, but otherwise seems comfortable with no noticeable pain.

There are so many things as a parent of a special needs child that you need to process and comes to turn with. The things I used to think were big, like never urinating, taking nothing by mouth, and still not crawling, seem like small and unimportant things right now. It's been extremely hard to stay positive with the course that's been handed to Conley and our family. Every turn we hit another serious road block. We've accepted each part that has been handed to him, but honestly, what gives. Please don't ever take for granted the wonderful things you have in you life, especially the health of your children and being able to spend time together as a family. I hope we can continue to inspire others to be grateful and appreciative, despite the daily battles we face.

Oh, they just walked in for the ultrasound!