Let me begin this by apologizing if this sounds like a rant. It is really not, but it will no doubt come across this way. I also want everyone to know that the PACU nurses and certain doctors involved, who are completely awesome by the way, were actually more spirited and upset than we were about what actually happened tonight. The surgery went well and the central line is placed. It took them close to two hours to do this and they did have to use a cut-down technique. This is where an incision is made in the neck to gain easier access to the vein they are tunneling the line into. It is a bit more invasive than your typical central line placement. They are still a little uncertain if it is the size of Elias veins or his anatomy that make it so difficult to place. Elias has been admitted and is resting somewhat comfortably and everyone seems pleased with the way things turned out, with the central line placement and the way the site looks.
Elias surgery was completed at 4pm we were not admitted into a room until after 10pm and here is why. Here at CCHMC when your child’s surgery is over you are paged to a consult room where you meet with the doctor that performed the procedure. When we met with his surgeon he told us how things went in the O.R. and that they were successful in placing the line. He said that at this point they were going to send us home and there was no reason to admit him. We asked him about the plan that we thought was in place from our discharge last week and he said that there was no way they could get Elias in the schedule this week. As far as he knew next Thursday was probably the earliest they could go in to do the G-tube revision. We immediately expressed concern for the NJ-tube and explained we were taping it 3 times a day and we had an ER visit Monday to place it when it slipped out partially into his stomach. He sort of nodded and agreed it was not ideal, but that this was pretty much our option. So we were back to going home. I had a conversation last week with one of the FA nurse coordinators about different options with lines and if they had any input. She had explained there is daily and weekly maintenance that needs to be done to keep the line working properly and reduce the risk for infection for just about all the options, including the central line. I asked the surgeon about that and he told me word for word, “no its fine you just need to keep it dry. The PACU nurses can help you with any questions you have.” So when we were allowed back to be with Elias post-surgery I let the PACU nurses know what the doctor had said so they could prepare time. His nurse laughed and asked us if we had been given any training, she already knew the answer, no we had not. She explained the process, but told us that we need the education on this, much like we had to do with the G-tube and Trach. They would also set up visits in home for them to come out and help us the first few times and check on the line. We were not going home tonight. Then the game began. The shortened version is everyone but the surgeons said Elias needed to stay and we had to do our training before he went home. Surgery said they never admit children for central lines. Now in order to be admitted Elias needed a “service” or specialty to be admitted under. This would be the team that is in charge of his overall care management and bring in the other specialties to consult as needed. Surgery service would have been the most obvious selection, but they refused him citing the we do not admit for central lines, which everyone else says is not accurate. During this we get the post surgery x-ray report which was checking for any potential internal issues particularly in the chest and airway. Well guess what, the NJ tube has curled into the Stomach. So now the obvious choice for admission service would be GI, for several reasons. First off, the NJ-tube issues and secondly because they recently discharged him and know him the best. Without knowing many of the details the jest of things we got out of our PACU nurse was GI refused him. ENT was next, they had not even been involved with any of this other than the fact that Dr. Rutter’s name was mentioned as being in on the plan for the central line. There were not any issues with the airway so they would simply call GI in for the NJ tube and the “training team” to teach the central line. So no one will take Elias. At this point the entire PACU unit is working on the case. Calling everyone and their brother and constantly apologizing to us, especially with what happened to us back on our initial admission where we were chased away by the charge nurse on the GI floor. We are laughing our heads off at this point literally. We have apparently been dubbed the “coolest parents ever” by them. His assigned nurse was a former BMT nurse so she placed a call to the FA/BMT on call. They took us on but could not place us on the BMT unit because they were full. Both the Fellow, Dr. Bishop, and the attending on call, Dr Marsh came down and introduced themselves and got some history. Honestly, Elias thankfully really does not need BMT services at the moment, but they look out for their patients and thank god for that. They could not believe that no one would take Elias and were also upset that surgery was going to allow us to go home without training. If that would have happened, then the line would not have worked when we returned for surgery or even worse an infection could have occurred. Fortunately that potential scenario of me getting mad seven ways to hell and back will not have to happen over that. A lot of people are going to be having a lot of conversations about all this tomorrow morning. I suspect that I will be seeing many different upper level people tomorrow. It was all the doctors and nurses that couldn’t believe the scenario that are reporting it, not us. The funny thing is, we did nothing but sit back laugh and enjoy the show. Why could we do this? Because we knew if push came to shove the FA team would pull through and they did but honestly it is way outside their scope of care and stretches them a bit more than they should be. While the plan right now in terms of moving forward are pretty cloudy and undefined I suspect that we might be presented a knew line of thinking and a different plan, but I could be wrong. There were a lot of really upset and angry people on many levels over this and rightly so. We still have to have GI consult because we need them to tell BMT what they want to be done with the NJ, which obviously needs to be fixed before we can feed him again. Katharine and I also want to address the fact this is the second time in 48 hours that it will need to be replaced, under fluoroscopy, which is light radiation exposure, but none the less exposure. Not to mention the cost this waiting game is imposing on us, be it hospitalizations waiting for the date or ER visits to replace a slipped tube. We are curious to hear how this is all going to play out and who’s heads are going to be on platters before the end of the day. Again the funny part is none of it is our doing except that we existed and were there! The sad part is this is the second time in as many admissions that there have been these insane crazy off the wall issues. The positive part is we are not the ones having to create havoc over them. The staff involved does it for us. Nothing is perfect and we realize that and it helps to know that we have the FA team, but there may be a time when they truly can not come to the rescue and we can not expect it to be that way. It is comforting though to know they care that much. We will let you know how this unfolds as it shall be interesting to say the least.