- Thomas A. Edison
Oh how the road blocks just keep on coming. Lately, I'm being quite honest and open with you as I navigate this new path of uncertainty. The journey has not changed...the story of my experience with gastroparesis and any ideas, inspiration and support for others along the way. Even when it feels like walking in circles, dizzy with frustrations, or possibly sliding backwards, I want to continue to share what is going on.
It has been over 3 weeks with the new J-tube and unfortunately things aren't going as well as we hoped. We can't figure out whether it's the "chicken or the egg," if the increased intenstinal dysmotility is causing the tube feeding pain or if the tube feeding is causing more trauma in the intestines. Whatever it is, I'm not able to get enough calories to gain any weight, which at this time is the major concern.
After talking with a number of both medical specialists and patients, we have made a decision that it's time to get on TPN, Total Parenteral Nutrition. This does not mean I will be completely dependent on IV nutrition. It will, however, give me the added calories needed that my gut cannot handle at this time. The idea is to have it for 2-3 weeks, give the intestinal tract a bit of a break for healing, and then re-evaulate. This morning I am heading into outpatient at the hospital to have a PICC line placed and blood work done to determine what my needs are. On Wednesday a home health nurse will come to my home, show me how to set it up and start with just hydration packs for 2 days. Friday I will begin slowly using the actual nutrition for 12 hr increments throughout the night. Each week the nurse will check in and draw blood to make sure everything is going well.
I have an incredible team all working together (they even conference call!) including my local physician, his nurse, a home health nurse, and the dietitians with ThriveRx who are so compassionate and knowledgeable when it comes to gastroparesis care. Not to mention a gal who recently emailed me and offered to share her experience and support as she has been successfully using TPN for 9 months now and currently working her way off. She also has a blog that I've found helpful, positive and inspiring which you can check out here at www.daybydayglutenfree.com.
Now that I've shared some of the details, there are still many questions and concerns hanging over my head. Am I scared? Yes. Do I have control over what is happening? No. Will this help me or am I making the wrong decision? I have no idea. What I do have is faith, hope, and the love of those around me to keep me going, to assure me that no matter what happens I must surrender to universe and embrace the fear and the uncertainty without allowing it to take me down.
There are many people out there, millions, who are living with GP and still thriving without ever needing to depend on tubes or IV's. Then there are those that do and we cannot feel like we have failed for it, which has been an ongoing battle to not feel that way. This next check on my bucket list is just another step towards finding solutions.
The Oley Foundation is a great resource to learn more and connect with others about home tube and IV nutrition.
If you or someone you know has gone through similar challenges, you yourself have questions, please feel free to comment below.