Post-op day1: 1:53pm

Things are pretty much the same with Jimmy. He remains on the vent, not much weaning going on at this time. Oh well. I wish I could have a conversation with him. He still has a fever. Tylenol is not helping much at all. Preliminary reports show gram negative bacilli and gram positive cocci in cluster from his sputum culture. He has been receiving vancomycin and with these prelim results they have added Cipro. He remains on an insulin drip for elevated blood sugar.

I have spoken with several physicians this morning. They assure me that he will recover from the current situation. However, once he is recovered, the question becomes: what is the next step? So all the docs are putting their heads together to formulate all possibilities for future treatment. By no means is this over. As we have been told before, there is a possibility/probability of transplantation. SO, instead of waiting until they need information emergently, they are going to go ahead and work him up for transplant to determine if he would even be a candidate. There are SOOOOO many physician minds collaborating that it is unbelievable. We have the heart docs from St. Luke's, transplant team, congenital heart specialists, and I am sure the list goes on. I was told this morning that they plan on talking to me this afternoon to present all possible options.

As some of you may recall from the hospitalization in July 2008, they thought Jimmy had a bad gallbladder and they also told him that he had a cirrhotic liver and wanted to do a biopsy. Then the good cardiologist came in and said that is not necessary because this is all related to his heart. So, that was that. No one ever mentioned the liver again....until this morning. It is not uncommon for patients with failing Fontan's to also have bad livers due to venous congestion. And apparently, they have found, over the years, that when the failing Fontan patient needs a heart transplant, they may also need a liver as well. SO, in order to evaluate liver disease they will have to do a trans venous CT guided biopsy.

As you might be able to tell from the tone of my writing this afternoon, I feel better. I am a little worried that he remains intubated with a fever and high O2 requirements, but the docs assure me that this will all be OK...I think maybe they HAVE to say that. I am used to more reality based promises of uncertainty.... The nursing staff is wonderful. I hope that they will say the same about me, even though I am sure that I have been a pain in the butt, I really am trying to be good. All my nursing friends will appreciate that I am sure. Again, thank you all for being great, supportive, human beings! I feel overwhelmingly blessed to have such an extensive support system.