Update 7: A busy day!

Yes, we are still here! I'll try to condense the last few days as much possible without leaving out too many details. Last Sunday, Lydon was looking better. Our team acted very quickly in contacting Dr.P who ordered the antibiotics and other meds to get Lydons fever down and keep him comfortable. So by Sunday, he had already had meds on board for 24 hours. Monday was a pretty quiet day. We made some progress with his J-tube feeds so that was encouraging. By Tuesday though his labs weren't looking so hot. His white count was way too low and his cultures were still positive even though we had increased his dose of the Vancomycin more than once. He was Neutropenic meaning that he didnt have enough white blood cells in his body to fight infection or bacteria. Yuck! This meant that everybody had to wear gowns and masks in order to protect him from getting anything else. We also got the sensitivity to the bug that was growing from his central line and decided to switch his antibiotics. Later that afternoon, his central line stopped flusing and giving back blood. Yuck, Yuck! Nobody was happy about this but we all agreed it was best to pull the line. I was so nervous and afraid that this would send us back to PICU but I was wrong and so happy I was. The procedure was able to be done in Interventional Radiology with conscious sedation and no intubation. He was very very sleepy from all the drugs and we had to spend a couple of hours in the recovery room but we avoided the PICU so that was just fine with us. I was so happy that he seemed to be doing so good in recovery that it was a while after we had been sitting waiting for him to wake up when I realized they had put in a single lumen PICC line instead of a double. I was so upset and felt like a big fat failure for not making sure that everyone involved knew the specifics. Having a single lumen line means that we have to disconnect TPN and lipids and break the sterility of the line everytime we give one of his antibiotics instead of having one line for the TPN and one for everything else. He had a double lumen central line when he went in so I just assumed (stupid me!) that the line would be replaced with a double lumen. Anyway, whats done is done and there certainly wasn't anything that could be done about it at that point. This line will get us by for now and we skated past PICU right up to our regular room so I figured I can't complain too much. Well, that wasn't until about an hour after we got to our room and Ly's pump started alarming. I went over to look at it to see what the problem was when I saw that his whole bag of lipids was empty! His lipids are infused over 18 hours and it was full when they restarted it in the recovery room. I panicked for a minute but we quickly checked his blood sugar and started running some extra fluids. Luckily, lipids are basically just a bag of fatty acids so there isn't anything in the bag to throw him off metabolically. We joked that he got a McDonalds value meal supersized! ;) We checked his triglycerides this evening and they were nearly triple what they had been but we are still running extra fluids so he should be ok. As of tonight, we havent made any progress with his feeds. There is a rumor that if we have a negative blood culture today and tomorrow and no fever in the mean time, we may possibly be able to go home Friday! I'm not holding my breath but man that sounds good! It will be busy with managing all of the fluids and med schedules but we all want our boy home! I'm terrible about posting pictures when I'm here, but I will try to post some tomorrow. My sweet family has pulled together a memory foam pad for the window seat where I am sleeping, a mask to block out the light and ear plugs for all of the noise....Lets hope for a peaceful, restful night. I'm anxious to try it out!! ;)