Early tomorrow morning I'll be heading up to Baltimore for a "PEGogram" to determine the actual position of my peg-J tube. Ever since the tube was placed this past January, it has been a constant battle not only to find a formula I can tolerate but also to simply tolerate running anything through the tube. Whenever I do, I experience pain, shortness of breath, and a number of strange neurological symptoms. This is what happened last summer and was the reason I moved to TPN (arterial feeding through my veins) this past August. It seems that the peg-J tube was either not placed in the correct location or became dislodged, so this imaging test will give a more definitive picture of where the tube is presently positioned. After the 9am imaging, my parents and I will meet with my doctor at 11am to discuss the results and decide whether to schedule the procedure to reposition the tube. We will also discuss whether to return to TPN as the main source of my nutrition/caloric intake.
At the moment, I am continuing to stay on my feeding pump and do all I can to take in homemade formulas, but my weight has been gradually slipping. I cannot tolerate an increased flow rate on my pump or running my feeds more than 14 hours at a time. Returning to TPN is one of the last things I want to do for a number of reasons:
- The high risk of a bacteremia infection (1 in 6) which is what put me in the hospital this past January and on the subsequent month-long course of IV antibiotics.
- Having to rely on "chemical nutrition" in my bloodstream and also lipids which are difficult for the liver to process.
- Having to take in corn dextrose again (my body is highly intolerant to this).
- Running it for 12 hours at night and disrupting sleep.
- How sick it makes me feel.
My doctor still has to approve these things tomorrow, but for now, this is where it looks like things may be heading. It does sound feasible and worth trying when you lay it out there, but I would not be honest if I didn't acknowledge that there is no guarantee that this path will be successful or most likely will not bring quick results. One other new development is that (through the incredible generosity and kindness of friends) I have also recently seen a new doctor who is running tests for adrenal/thyroid function, along with some of the Lyme coinfections such as Bartonella and other bacterial/fungal issues. He believes that addressing my adrenal/thyroid function could make a difference in my motility issues, and he is also concerned that I take in omega 3 for brain function. I still have a bunch of labwork to do for him and would be grateful for prayers that we would be able to get the necessary amount of blood drawn which has been quite difficult lately.
And so, I am grateful that there are still specific things to do and try in order to keep fighting for progress and some kind of breakthrough, but even so, there is not a clear path to success or healing laid out before me. I continue to desperately need the strength and wisdom of the Lord for each step.
Thank you all for each and every prayer. I could not do this without you. You are God's gifts to me in a very dark valley. It is amazing how He always has people pray at just the right times. Each moment is incredibly difficult right now, but the hardest times usually come as the day progresses (the longer my pump has been running) and into the evening. I will be having a blood draw done at 4pm today and then to recap, will be heading to Hopkins early tomorrow morning for the imaging study.
So grateful He is in control!
------------------------------------------------------------------------
Show me the right path, O Lord; point out the road for me to follow. Lead me by your truth and teach me, for You are the God who saves me. All day long I put my hope in You. Remember, O Lord, your compassion and unfailing love, which You have shown from long ages past. - Psalm 25:4-6
No comments:
Post a Comment