We are kind of stuck between a rock and a hard place right now. It seems like so many of our decisions do not have a good choice. Alex continues to struggle with pancreatitis. His levels are 6 times the high end of normal and have not budged. He started with a fever 2 nights ago and it has creeped up and is sitting in the high 101's. No one is really sure what our plan of action should be. We have enough going on that there is no definitive proof of what is causing the fever which leaves us trying to make decisions without a whole lot of information.
This is what we know...Alex has pancreatitis. Alex has a blood clot at the end of his fem line which is sitting in his IVC. Alex has a fever.
This is where it gets confusing. Alex's pancreatitis has been the same for a week. There would be no reason for him to all of a sudden develop a fever. The doctors do not like to leave a femoral line in for this long bc they can be prone to infection. Also, a clot can be a source of infection. BUT, all of the cultures we have taken are negative and his labs do not look like he has an infection. The question is whether he has an infection that is not showing bc he is on two big gun antibiotics. SO, one group of doctors think we should pull the fem line. But we need access so we would have to do another line somewhere else that would be temporary. This would use up a central access spot that could be necessary down the road for a short time. THere is one spot they could do a peripheral IV, but then they would really struggle to get all of his medications in and they wouldn't be able to get nutrition into him which is never good with Alex bc he is already so skinny. The other group of doctors thinks we should try to leave the line and just watch until he gets worse or we find a definite cause of this fever. The problem with this is that if it is the line or the clot, he could become septic again and we could wind up in the same position we were in last week. Also complicating matters is that if we pull the line we could dislodge the clot and it could travel to his lungs and cause issues. We have done a chest xray. We will do more testing if his fever continues to climb. We are also waiting on our surgeon to come by and weigh in. Unfortunately, each day with a fever is another day before we can do surgery to replace our port and means another day we are stuck here. So the wheels have been spinning here all morning as we weigh the pros and cons. There is no right answer.
I am doing okay. I was lucky to have lunch with Momo (Missy's mom) today. She brought me food from my favorite restaurant and kept me company for a while. Tomorrow, the Morgan family is coming to celebrate New Year's with us. I am so thankful for friends. I was sad we didn't get to have the vacation we had planned with Grandpa. I was sad to say goodbye to my Mom. I am sad that Bruce is not here to help with Alex. But I am surrounded by people that love me and Alex and take the best possible care of him. I am bolstered by the love and prayers of all of our friends and family. I am thankful for the generosity of others that truly showed us the magic of the season and eased the burden of our house so I could concentrate on taking care of my precious baby. There are so many people I need to thank. Please know that I am thankful just too tired and busy to write you proper thank yous right now. The messages, notes, emails, cards and prayers have kept me going over the last 10 days.