It's been a terrible, horrible, no good, very bad week

I really don't even know where to start to explain to all of you how absolutely terrible the past week has been. Last Friday, Max underwent his 13th surgery to replace his catheter. He spent the night in the hospital and was released on Saturday evening. Saturday night's treatment went okay. He had a lot of alarms, but we made it through the entire 12 hours. Sunday night was a totally different story. I couldn't get him past his second drain, so I ended up having to end his therapy very early. Same thing happened Monday night. So on Tuesday we made a trip to Children's Hospital. They put TPA in his line and it seemed to be helping, so we headed home. To our disappointment, the treatment ended the same as the two previous nights. We headed back to Children's on Wednesday morning and there we stayed. They did another dose of TPA and the catheter drained beautifully. We hooked him back up to his dialysis that night and couldn't get him past the second drain again. We ended the therapy early for the forth night in a row. Everyone, except for me, was ready to send Max back to the OR. I asked the doctors if we could try one more thing and they all agreed. It worked! They did a 6 hour run Thursday morning while we were at the hospital, and it went beautifully. We got discharged Thursday evening. When we got home, we hooked Max up to his dialysis, and you wouldn't believe it, but it did not work. I had to end his therapy after the second cycle for the fifth day in a row. I didn't give up hope just yet. I was trying to figure out what was different from the treatment in the hospital vs the treatment at home. Everything was the same, except for one thing. Max was awake at the hospital and asleep at home. So on Friday morning, I called the PD nurse like I was instructed to do and told her that I wanted to try one more thing. If it didn't work, I would bring Max right in. Everyone agreed, so I started my little experiment. I hooked Max back up to his dialysis while he was awake and moving around. Wouldn't you know, the dialysis actually worked. For 12 straight hours, the machine put fluid into Max's belly, dwelled it for an hour and drained him perfectly. Thank God!

So since Friday, Max has been hanging out in his room attached to a four foot leash. He has done remarkably well. Today we decided to bring his machine down to the living room so that he could hang out downstairs with everyone. Things were going perfectly. Max was hopping all over the place and ended up getting himself wrapped around his machine. When we went to unwrap him, we didn't see that the tubing was pinned under the machine, so when we picked him up, his catheter got yanked out of his belly. Max started screaming, fluid starting flowing from the exit site and I panicked. I ran outside to get Tim and then I rushed to call the fellow on call, that thankfully ended up being Dr. Ben. I was running around while on hold packing our bags and trying to get everything that we would need during our stay at the hospital. I finally got a hold of Dr. Ben and he told me to keep sterile gauze on it to catch the drainage. Tim was already on that, so I asked what else we needed to do. He told me that he was going to call the attending to see if we needed to come in and if we needed to start antibiotics. Ben called me right back telling me that Dr. D wasn't too worried about infection and that we didn't need to come in. I was blown away. I thought for sure that we had just landed ourselves into the hospital for the next few days. We spared our Sunday evening in the hospital, but we will be going in tomorrow morning for Max's 14th surgery.

We are due to arrive at CCHMC at 6:45am to get Max admitted. From there we will head to our room, answer 1000's of questions that I have answered over and over again, get Max's labs drawn, an IV put in and fluids started. We will then start the dreaded wait of when Max will be called to the OR to have his catheter replaced. It could be anywhere from 9am to 9pm. We are considered an add on, so they will fit us in when there is an opening.

And that ladies and gentlemen is what we call a terrible, horrible, no good, very, very bad week.

Hope all of yours was better.