We actually got home last night but Ive been too swamped to post. Noah has an external line infection but his blood cultures are clear so its not in his blood stream (praise God!). His line has migrated very significantly internally (several inches) but somehow did so without really moving externally - his stitches are still intact. If you think of his line as a drinking straw, this will make more sense - because of how it moved, it should take a 90 degree turn at one point but is going straight ahead and is therefore right up against the wall of the vessel. The line infuses OK, meaning we can put things INTO Noah through the line. The pressure of the medicine being infused manages to push through and generally work OK although weve had to switch to more powerful pumps for some things. The tricky bit is drawing blood OUT - the suction pulls the vessel wall up against the end of the line and seals it off. After lots of TPA we have one small lumen that wont draw at all, one small lumen that will usually draw, and his large lumen (that we are supposed to draw from) MAY draw IF he lies back at a 45 degree angle, raises his left arm straight in the air, and coughs repeatedly. Seriously. He does everything but the hokey pokey LOL. Because of his breathing difficulties and his bleeding difficulties, it was deemed just too risky to replace the line right now. Odds are it wont last too terribly long, but if we can keep doing the hokey pokey and if we can keep the site infection from getting too much worse, well gladly keep the line as long as we can. Noah is very, very tired. He slept in until almost noon on Wednesday, went down for a nap on Thursday but didnt wake up until Friday morning, and slept in until 12:30 today. Unfortunately his labs arent showing any sort of easy fix - for example, if this were due to low hemoglobin, a transfusion would likely perk him right back up. It may be that hes got some sort of virus or that his difficulty breathing just has him worn out. His face is very, very puffy but they ruled out any kind of big clot while we were in the hospital so we are chalking this up to Engima Boy Strikes Again. He seems to feel pretty good while hes awake so were just trying to make the most of those times and are thankful for them!!!
Posted on: Mon, 14 Jul 2014 17:09:25 +0000