Aaron's initial viral panel came back positive for staph and positive for a gram negative coxi (sp?) yet to be determined. The staph they believe is in his trachea and for now will not be treated. The coxi will hopefully be identified sometime today and they will decide what to do about it then, they are thinking they will most likely give oral antibiotics for that. From the pictures you can see that Aaron's belly is quite distended, mostly from an enlarged liver. Aaron's direct billiruben is very high and his skin is very yellow. Between the prolonged doses of heavy antibiotics in the last 2 months and multiple sepsis episodes his little liver is having a hard time keeping up and is getting backed up. If it fails, the only way to fix things is most likely a transplant, something Aaron may not even be a candidate for at his current age and size.
This week will most likely be the longest week yet, and that is saying something! Aaron will have an extensive echo this morning which will be sent directly to cardio. If he "passes", all left to right shunting, they will schedule him for transport and for his heart cath. We are anticipating that to happen on Tuesday but will know hopefully by the end of the day when everything will play out, the sooner the better at this point.
Ronny and I know that this week is going to be rough and we will need to be at the hospital quite a bit. Sleep has become elusive for me now, I know I need to rest but my body just won't allow it. The kids go back to school this morning. I know this week is going to be difficult for them as well. This is the time I most wish I could split myself in two so that I can be in both places taking care of all my children's needs. We'll just have to figure things out as we go.
Standing in Aaron's room these last couple days I can feel that Heaven is very near. So many times Aaron has stood on the threshold of both Heaven and Earth and weighed his options. We are there yet again. In these next few hours and days we will most likely know which side Aaron has chosen. Things may change rather quickly in the upcoming days so I will most likely not be able to update the blog as quickly as everyone wants, I will do my best as time allows. With all the stress and uncertainty that lies ahead its hard to wrap our heads around the idea it will become more chaotic than what we have done thus far, yet both Ronny and I feel a sense of peace that all will be well. Forward we roll.........
Monday, September 26, 2011
Posted by bjarnason family at 3:51 AM