To be perfectly honest I'm not even sure where to begin this update. We have so many thoughts spinning in our minds that it is sometimes difficult to explain anything in words that anyone can understand. I guess the best way of summing up our present situation is to say that Gavin has again reached a critical point in his is health. There are two ways to go from here -- things can either get a little better or things will get much worse and he will not be able to recover.
The main issues we are dealing with right now are this increase in severity of infection, his more severe response to infection and his central line access. We were all hoping that after Gavin's bowel removal that our life would change for the good, and initially it looked like Gavin had taken a huge turn for the better, but then these past two months he has been hit by multiple, multi bug infections. Right now we are trying to figure out what is exactly going on and what is causing the increase in infection. The first reason we know of is that Gavin's immune system has been declining over the past year. He spends much of the time being neutropenic, meaning that he is unable to fight any kind of infection. This is something that we can help thanks to the IVIG infusions we are wanting to start more frequently. The other obvious issue is that the small amount of jejunum and stomach that he has left is pretty much useless and often leaks bacteria into his bloodstream, which then attaches to his catheters. The last issue, which at the present moment is worrying Adam and I is Gavin's fascination with picking off his ostomy bag and giving himself and bath of bowel fluid and blood. We are trying out best to try to prevent these occurrences but Gavin is determined to defy all attempts to restrain him. Ostomy fluid bathing and compromised immune system is really and huge issue. S0 -- we are working on trying to find a way to ensure that Gavin is not a threat to himself.
Besides the infections we also have the issue of central line access. Basically when the time comes when they can no longer place a line we will have no choice but to be finished. That is enough information to scare the crap out of anyone. Gavin's chest wall is covered in scar tissue making placing a catheter increasingly difficult. The surgeon had a talk with me this week that literally shook my world -- the reality that Adam and I will have to choose at some point when we will say we are finished. We discussed other options that have been brought up in the past such as transplant but they are all quickly shot down as Gavin would never survive a transplant as are most intestinal transplant centers refusing to transplant a patient with the Mitochondrial diagnosis due to the poor outcome. Again -- simply heartbreaking.
So here we are. On Friday Gavin had his central line removed and they were able to successfully place a PICC line in his arm. Today I got word from the doctor that Gavin's PICC line is now infected with the bacteria that was on his CVL.
I'm not sure what else to say. We have a new plan to start Gavin on frequent IVIG infusions and to try to keep his levels above normal to help him fight infection, but this really will not be effective until we get him "clean." We have a plan to go down on Tuesday for blood and the IVIG and we are saying a prayer that we can treat this bacteria that traveled to the new line before the infection is to sticky.
So -- if I haven't lost you all, you are simply amazing. Yes, we are a little frazzled right now but I think we still have hope. Gavin can give anyone hope -- just one flash of his award winning grin and my mind is taken away from all things negative.
Thanks for your prayers and support.