We Have Some Answers

The great news is that Avery's heart and kidneys are just fine. Phewwww...

The good news is he is not sick with pseudomonas this time.....Finally

The not so good news is he is sick with H influenza and enterobacterial mucous in his lungs. What is not good about it is this H influenza is something that is in the environment everywhere but it does not make us sick b/c we have the immunities to fight it off. So it is not something that would make us sick but for Avery whose immune system is so low, it made him pretty sick.

The pulmonary team suggested running a large immuno. panel on him to see if we have some explanations of why he has been sick for the past 6 wks with such random stuff. Well the results showed that his IGg is 325 and it should be in the 600s and his Iga is only 200 and it should be much higher.

This is something that is pretty common with mito kids that their bodies just don't have the energy to make or keep up with the immunities that they need to fight off infections and also these kids can get to the point that Avery is where they need frequent blood transfusions b/c of the same reason. So a solution for this is to give him monthly IVIG infusions through his port-a-cath to boost up his system.


So I have mixed feelings in that this is just ANOTHER new territory for us and requires more accessing of his port and just more interventions but good b/c if we can boost his immune system then we can keep him more healthy and out of the hospital which is our goal.

He is going to be in here probably through the week b/c he is still requiring O2 and we have to get a better idea of what specific antibiotics to put him on to better fight these bacterial infection and see how he responds to them. I just want to make sure he is "fixed real good this time" (to steal a line from one of his nurses) before we take him home just to turn around again.