The TPN Plan

(Warning: I'm tired... I hope I make sense tonight!)

Today we met with Gracie's GI doctor and, after a very long conversation and seemingly endless questions and answers, we came up with a plan.

Gracie will be admitted (date to be determined) to receive a PICC line. This is a line that will be placed peripherally (not a surgery, thus no general anesthesia will be required) to allow us to administer TPN. The site for this catheter should last Gracie about 6 weeks, maybe a bit more. The doctor's hope is that, in those weeks, we can stabilize her digestive system, put some weight on her and then hopefully return to G-tube feedings full time. Since Gracie's always struggled with GI and feeding issues, regardless of her nutritional status, John and I aren't overly optimistic that the six weeks of TPN will "cure" her numerous GI-related issues; nor do we think that the abdominal migraine cycles will stop entirely. At the same time, we would rather not put her under general anesthesia to place the line and attempt TPN if we don't have to. Therefore, we opted to try the less invasive PICC line first. Then, if we, as a team, decide to continue with the TPN, they will place Broviac catheter under anesthesia. Should this be the route we take, we would also be combining a few other pending minor surgical procedures with that single anesthesia.

Gracie will be in the hospital approximate four to five days, during which time they will monitor her TPN intake and build up to her full 14-hour per day regimen that will provide all of her daily nutritional requirements. We will need to continue feeding her small boluses through her G-tube in order to keep her digestive system active and functioning, but the number of feedings/volume per day will be reduced and the nighttime feedings will be completely eliminated. She will still receive all meds via G-tube. Again, John and I don't expect that Gracie's issues will be completely resolved. But, with less pressure to "force feed" her and the ability to back-off the enteral nutrition (through the G-tube) when she is in the throws of a cycle or is sick (because anytime she has any type of illness, it manifests in her gut, too) the faster we can get her through the cycle or illness without compromising her nutritional status.

We have numerous things we are concerned about regarding this proposed regimen - - for starters, how will we keep her happy and connected to an IV for 14 hours a day, especially since when she's feeling well, she doesn't sleep much more than 7 hours in a 24-hour period?! But until we get to that point, we aren't going to borrow trouble by worrying about all the "what-ifs." (Well, we are going to try not to do that.) The bottom line is that we've exhausted every other option - - the pros far outweigh the cons.

As for the abdominal migraines, there is very little research on this subject matter, especially in pediatrics... that has been a challenge for us and so many other families who are struggling to get successful treatment for their children. Furthermore, there are many doctors (even in the most progressive hospitals) who do not recognize the condition as a "real diagnosis" and try to treat it by "knocking out" the patient rather than finding the root of the problem. Gracie's old GI doc (in Sacramento) was progressive in that sense, and truly recognized the problem. However, she was as helpless as we were in finding a solution. Perhaps that is finally going to change. Today we were made aware of a study currently being done by a doctor at CHLA (Children's Hospital Los Angeles) for which Gracie might be a candidate. Stay tuned on this...