updates

We just saw the nutritionist.  This is the first time since getting his TPN that we have seen her.  Jacob has not been tolerating much formula anymore so I knew that she wouldn't be too happy with the way things are going.  And I was right.  He has actually lost 3 lbs since coming home from the hospital, which is pretty discouraging.  I knew that they were starting his TPN on the low side because we were hopeful, leaving the hospital, that he would tolerate more formula through his GJ tube.  Well that hasnt been the case.  So she wants to up his TPN.  And I figured that would be the case.  But since we are not getting much of anything in him, formula wise, its hard to figure out what to give him in the way of TPN.  She said if it was up to her, she would take him off formula all together and just focus on getting him to gain weight and getting his nutritional needs met.  But if we take him off formula all together, then we are making it so that his intestines die because they are not being used.  She then thought it would be a good idea to just give him a very slow drip at about 5 ML/hr just to make sure the gut is getting fed something.  That way it keeps it alive and working.  But then again she doesnt want to do that because any time he has anything in his stomach or his intestines, he has pain.  So that would just cause him constant pain.  So she was going to go talk to the doctor and see what she wanted to do.  They are going to up his TPN for sure.  Other than that, I really have no idea.  She told me that we will probably never get around his stomach hurting all the time.  Its just something we are going to have to deal with.  I am so tired of hearing that!!  I have heard that 3 times in the past 2 weeks and I just want to scream!  Every time we have a doc appt I leave in tears.  I am just so stressed out with the way Jacob is doing.  It scares me to death because its been a long time where I have head the words "he is doing great!  See you next year" haha. 

Jacob has been having granulation tissue around his broviac site.  For those who are not familiar with granulation tissue, its tissue that grows on the outside of an opening.  It usually grows when the body is trying to heal itself.  Normally you get it around the gtube site.  And its pretty common.  Its not common around the central line or broviac sites.  For Jacob, its very painful.  It bleeds and it has nasty discharge.  And so we went to the doctor to make sure it wasnt infected.  And he said it was just granulation tissue like we thought.  And we heard those famous words...and there is nothing we can do about it.  His body seems to be rejecting the broviac.  So not only is it trying to heal and its not working, its pushing his line out of his body!  We go back next week to see if it has come out any further.  If not, then we will just deal with the granulation tissue like we are.  If it is, then the doc will have to pull the line and we will have to place it somewhere else.  I REALLY hope its not the 2nd option!!  But Jacob loves to be rare and he always gets those rare side effects.  So why not!

I will update more when I know the updates from the doc appts.