Things changed so many times today it is hard to believe we made it to the end in one piece. I told our nurse: If she was Kim Kardashian she would be out of a job, because she has run her butt off for the past two days with Daniel. There were so many plans today, we ended up on with PLAN GG after going through the alphabet at least once. Whew! I have to say I am comfortable with where we are at tonight with everything and hope we can just not have anymore surprises or changes for a few hours. I will save everyone the details of the final result but as it stands we are most likely looking at CMV in Daniel’s blood and now crossed over into his lungs and gut. Again we all have Cytomegalovirus but our antibodies and immune system can squash it out when it is acting up. Daniel’s is like an activation of CMV as a consequence of having no immune system after transplant. The doctors strongly believe this is the reason for this sudden turn of events within Daniels lungs and it is causing IPS- Ideopathic Pulmonary Syndrome. Final cultures over the next days will confirm this. As results are known medications will be tailored to suit the culprit. The three dangers are Bacterial, Fungal and Viral and he has been on many anti- everythings for all of these to prevent. Now that he has a few diagnosed of these we have started several different cocktails of medications. I am not remembering if I had written that he also has a CoaG negative staph infection in his line, which is Bacterial. I have been told that the order of fighting these from easiest to most difficult are bacterial > fungal>viral. Again another difficulty is how hard these meds are on the kidney and liver and then if they even will work. These are some other tests that are pending to see which are drug resistant to which drugs so we can side step those and get to the ones that are effective fastest. The side effects of some of these drugs, aside from helping the problem are numerous as well as their interactions, however most importantly is the effect on his new bone marrow. They watch everything so closely at all times so that they are on top of all of these things right away. Particularly the lung situation because this can spread like wild fire and can be fatal. As bad and scary as that sounds I feel he is comfortable and being watched. They are doing everything to find out the exact type of infection he has and the right treatment. Until then they have actively treated the inflammation with EMbrol and steroids that have worked quickly. The feeding situation has not been desirable but will just have to be what it is. Daniel is very angry about the NG tube which tey were unable to place below his level of the stomach so it is actually in his stomach and they are giving him the most minimal amount possible to restart his nutrition. Because it is emergent that they get nutrients in him for the metabolism of the medications and most importantly the protiens he needs to fight the inflammation in his lungs they inevitably have to start him on the TPN (liquid nutrients) again this is very hard on his organs but they have no choice at this point but to kick start his nutritional levels artificially. They can’t wait for him to be able to hold the amount that he is actually requiring. They believe with the Embrol and Steriods on board and the tiny bit of food starting to be given in the tube (about a teaspoon an hour) and then supplementing with the TPN that we will be in business and maybe feeling better soon. By the time we figured this plan all out it was about 5 PM. After Rob left and things calmed down Daniel looked at me with pleading eyes and said he was so hungry asked if he could please eat some real food. Oy, how could I deny this. The doctors did not really want him eating anything of substance yet today in fear of him throwing up. They do not want him throwing up the feeding tube after what it is taking to get it to stay down (again I can’t believe he hasn’t pulled it out.) He didn’t want anything easy like applesauce to start off. Remember this kid hasn’t kept any food down now in over 7 days. Given the chance he would first pick sushi, then a Shanahan’s steak, but we compromised on some noodles. I gave him maybe a dozen lo mein noodles and he ate them one by one like they were the most delicious thing he has ever eaten. And he held them down. Woo hoo! He actually got into the shower and for once did not throw up after. It was a quick shower but I think after two days in bed he knew how bad he needed it. He is still deathly afraid of and uncomfortable with the tube and has come to realize that he may never get used to it, but as long as he needs it, it has to stay. Maybe with increasing amounts incrementally and little bits of solid food along the way will help him feel better and heal faster and just start a good snowball effect. The worst news of the day came when we found out that our stay here won’t be through the weekend. We are looking at several weeks to months with this and that has really thrown us all for a big loop. So although the DAY 30 and the DAY 100 are all big milestones, it has gone to show that this is truly going to be a year of healing. This is a big step back and keeping his spirits up to keep him going through this next phase is not going to be easy. I got to run home today to get some clothes and things. I only packed for a couple days and knew I was going to need more but wasn’t prepared for that much more. I did bring his Green Bay Packers flag to cover the light from the door so now he will feel a little bit more at home. Shit, I hate thinking of this as our home. I know I probably forgot more but tonight we will try to sleep and with the aid of earplugs for Daniel for the first night so he can maybe block out some of the beeping, I hope he can finally rest. Tomorrow we will start to redecorate our window and he can chose something for me to draw for him to help brighten his day.