48 Hours

48 hours is a REALLY long time, or at least it feels like a REALLY long time since Tuesday morning. One of those scary, bad things that can happen to a child with a permanent IV happened to Parker. It is one of those things that you read and hear about from other parents and hope that NEVER happens to your child. Those scary, bad things are always lurking somewhere in the back of my mind--I try not to think about them, but they're always there. Anyway, the scary, bad thing that happened on Tuesday is all fixed and better now, but for those who are interested in the details, here's the story:

On Tuesday morning around 10:00am I was getting ready to take Kelsey and Connor to swimming lessons, a picnic and then more swimming. Parker's nurse was here to care for him for a few hours while we would be out. I came downstairs to make our lunches and Parker ran into the kitchen. As soon as I saw him, I said, "OH, Parker!!!", grabbed him, and ran upstairs. The right side of his shirt was covered in blood, right where his IV catheter is. The nurse and I immediately tried to determine the cause for the bleeding out of his catheter, but we couldn't see for sure what was the cause (we had been having "leaking" issues from his IV since Memorial Day, and hadn't found the reason for those leaks either...). We stopped his infusion pump, clamped off his Broviac catheter and proceeded to hook up a new line. We then started up the medicine again and just watched to see if it would start leaking again. Within seconds, I saw a pinprick of blood come out his Broviac and I knew we had a problem, a BIG problem. The nurse and I could clearly see a small hole near the end of the Broviac. NOT A GOOD THING! We knew we had to get to the emergency room ASAP. I called all the people that needed to know, found someone to watch Kelsey and Connor, and headed to the ER.

The most urgent matter was getting Parker's IV medicine (Remodulin) started again. He is on Remodulin 24 hours a day and going off cold turkey for more than 3 - 4 hours can be extremely dangerous, potentially life-threatening. Dr. Williams had called the ER before we got there, so they were ready and waiting for as and understood the urgency in getting a peripheral IV started. After 4 pokes they got the IV in and the Remodulin running again. Next, a pediatric surgeon was consulted to see if the Broviac catheter could be repaired (I'm thinking a patch and some glue like you'd use with an air mattress or something...). They decided to try to repair it--surgery for a new Broviac was the last option--something we obviously wanted to avoid, if possible. The surgery team allowed me to stay with Parker while they performed the repair, and much to my surprise, they acutally cut the whole tube off, leaving just about an inch hanging out of Parker. Then, they took a brand new broviac that had a small connector sticking out the end, and inserted it into Parker's existing Broviac. Then they just glued it and splinted it like a broken bone. I was amazed. The glue had to dry for several hours, so we had to be admitted until we could try out the repaired Broviac sometime on Wednesday.

On Wednesday morning, the surgeon came in and said they would like to try the repaired Broviac out and if it didn't work, Parker would have to have surgery later on during the day for a new Broviac, so nothing to eat or drink until we figured out what was going on. The nurses came in and we switched his medicine from the peripheral IV in his arm to his repaired Broviac. About 2 minutes later, the infusion pump alarmed because of "high pressure"--basically, something was blocking the medicine from going through the Broviac. After talking back and forth between the cardiology team, the surgeon, and the Acreedo nurses that deal with Remodulin, it was determined that a brand new Broviac was what had to be done. There was most likely a blood clot in the repaired line, making it useless. We were not very excited about surgery, but we understood that was our only option. Parker was scheduled for 1:00. By 1:30 we were in the surgical holding room discussing everything with the anesthesologist and nurses, when by complete accident, we dropped Parker's infusion pump on the hard hospital floor, which cracked the tubing directly connected to the cassette. NOT A GOOD THING! All of a sudden, we had a new problem. We couldn't use the current cassette or its contents which could now possibly be contaminated. Somehow, we had to get a new cassette mixed with Remodulin so we could hook Parker back up and send him in to have surgery. We had brought all our supplies to make a new cassette of medicine, but we didn't actually bring the medicine. Long story short, having the hospital provide the medicine was not going to be quick, so we got the OK from Dr. Williams for Parker to be off of the Remodulin until the surgery was over and Jason drove home as fast as he could, mixed a new cassette and drove back to the hospital. He arrived just in time to hook up the new cassette of Remodulin to Parker's brand new Broviac. Parker came through the procedure just fine and was happy to finally be able to eat and drink. We had to stay overnight again to make sure the new Broviac was working properly. We left the hospital around 10:00am today--48 hours later.

So, now we are home, thank goodness! And Parker is running around like nothing ever happened. He has a brand new Broviac catheter on the left side of his chest and a soon-to-be scar on his right side. It will be a little awkward getting used to changing the dressing on the opposite side--it feels almost like we're starting over, except with some experience under our belt. The next few months we will have to be extra careful the the tube doesn't get pulled and that the area stays clean and dry. Infection can happen really easily the first few months. We hope Parker will make it through just fine. He is such a trooper and went through this whole experience without complaining or getting upset. He is such a tough little guy. We're so grateful that everything turned out OK. We know we're lucky. This scary, bad thing could have been a lot worse.