February!

Where to begin….

After over six weeks on the PICC line with TPN running through that line for 12 hours a day….Zachary did not gain weight. He actually lost some weight. He is becoming more and more miserable, fussy, and irritated daily. He does not want any of the tubes in his body. Anytime he is “hooked up” for a longer feed or his TPN he screams, “No tubes!” We were hoping that the TPN and PICC line would be the answer for the weight gain we needed, but it wasn’t!

It is hard to say, but we have reached the final choice for Zachary’s care. The doctors want to put in a permanent central line. This line would be able to handle a larger amount of TPN which would increase the calories going into his body. This line has much more risks, and the amount of TPN going through his system will be harder on his already stressed organs. The surgery alone is another risk for Zachary’s body, but it is the only option we have. The permanent central line will stay in his body for six weeks. At the end of the six week trial period if he hasn’t gain the weight the doctors want- the line would be removed. The risks of the line are to great….so they would remove the line, if there would be no benefit to keep it in. He would then be left with his G-tube feeds as his means for survival. Who knows….maybe his body would “kick in”? IF….at the end of six weeks he has gained the weight, the line will stay in, and we will go down that route.

The surgery is scheduled, and we hope that his body can handle yet another long surgery.

This is becoming more and more difficult as he is fighting all of his tubes. We are having a hard time dealing with the fact that we have no other options if this doesn’t work. However, Zachary is tired and cranky most of the time which helps us realize that his body is being pushed beyond what he can handle.

Thank you for all your thoughts and prayers. At this point we are hanging in there, but saying we are okay---wouldn’t be true. Having Zachary still be considered, “critical” is very difficult. Sorry this post isn’t uplifting, but it is the way things are right now!