Still battling the scale... Reconsidering TPN

We saw the GI doctor last week and Gracie was in a fantastic mood, wheeling herself all around the clinic to look at the pictures of all the kids on the walls. She was bossy, focused and insistent that she see every single picture. If I tried to redirect her toward the parking lot elevator, she pushed my hand away and wheeled as fast as she could in the opposite direction. I love when she is like that (even when it’s frustrating)!  Unfortunately, that was the best part of last Tuesday's clinic visit.

Her doc was less than thrilled with the fact that she has lost two more pounds (as am I, obviously, and I didn't need a clinic visit to know that she is, once again, going in the wrong direction). Last year, after the summer of horror, we had her up to 33 pounds. As the space between ends and another round of feeding issues begins (due to abdominal migraines, sinus infections, respiratory infections, gastritis and general intolerance at times), we're fighting to keep Pedialyte in her... calories are not even an option. If we were to hospitalize her every time she is in this state, she would be inpatient more than out.  And, they wouldn't be doing anything for her that we can't do at home - - or that we haven’t already tried numerous times. Needless to say, we are constantly chasing her weight and trying to build back up to her highest weight.  As months pass, the "high" number we are chasing starts to get lower and lower. That is, a year ago she was 33 pounds and after every illness we would do our best to pump extra calories in and try to get her back up to that weight before the next issue set in. Six months ago we were chasing 31 pounds and doing so fairly well. Last Tuesday (the 16th), she was 29.5 pounds and having a great day... two days later, she was down for the count, retching continuously for four days, barely tolerating Pedialyte and barely sleeping. It was a nasty abdominal migraine. I refuse to weigh her until I have five solid days of full feeds back into her little system... but I know she dropped more. Yesterday was the first time in nine days that her intake was over 1,000 calories… her goal is 1300.

Her current weight and constant battle with feedings prompted the GI doctor to suggest another round of home TPN. (If you don't remember how that went last year, you can read more about her summer in the PICU caused by her issues with having a central line by reading all the posts between June, July and August of last year… it wasn’t pretty.) The whole team agreed at the end of our summer of horror that it will be incredibly difficult to get a line in her again, let alone keep her infection free. Every line placed last year became infected no matter where she was... home or hospital. And, the infections (and yeast) were so bad, she was septic four times and in septic shock once. It's not a place any of us want to revisit. Yet, we can't continue on this path of weight loss either. Unfortunately, her body fights so hard and burns so many calories for her heart to function, for her breathing, etc., that when she is well, she often burns more than we can get into her. So, when she is sick, you can imagine how hard her body works to fight infection or pain on top of the regular work it does. 

The issues are deep. In her eight-plus years, we’ve tried every med, every type of feeding and feeding tube, multiple alternative medicine approaches and she has had surgery to repair every possible issue. The problem is, the roots of Gracie’s feeding issues are Central Nervous System (CNS) and Neurological and, at this point, there is nothing left to try.   What will we do? I have no idea. We go back in three months… or sooner if things get any worse. For now, we are continuing to ride it out, and do our best to beef her up in the space between.