God has been so kind. The waters are deep and the way ahead unclear, but I have been blessed by His continued sustaining help.
Today is a big day. Have had calls and emails in to my Hopkins doctor since last week to ask him to reposition my jpeg tube so we can discover whether proper positioning will make a difference in the severity of my symptoms and ability to tolerate the feeds or not. It is looking like I may need to return to TPN with the PICC line I still have in my left arm because I am just not able to take in enough calories through my feeding tube at this point. My mom has heroically been making experimental homemade formulas out of everything from kale to rutabagas, and I have continued to try prepared formulas, but it's incredibly difficult to endure the feeds. By the end of the day, it can be near unbearable, but there has been grace to keep fighting.
I don't know if my doctor will agree to TPN because it means returning to living with the risk of bacteremia/sepsis again and just isn't good for the body by any means. I honestly don't want to even think about starting it again, but the hope is that I would use that to gain weight while trying to take in smaller amounts of healing broths/nutrients through my tube with the goal of restoring healthy gut function (that is my non-Hopkins nutritionist's hope). I am also praying that if there are other tests that should be run, that I would be shown through another doctor, etc.
And so, we will see what this week brings. I wish I could make the tube work but it's just not improving. Thank you for each prayer. It has helped me endure this far. If I try to figure it out or think about what will work I am quickly on the edge of despair, for there is really no hope in the natural. But praise God that He is not limited by any of the "impossibilities" before me!
I thought the story would be different by now, but He's still on schedule. One day I will be free. I don't know if that will be tomorrow or 50 years from now, but that day WILL come.
So grateful for each of you.
------------------------------
For God alone my soul waits in silence; from Him comes my salvation. He only is my rock and my salvation, my fortress; I shall not be greatly shaken. - Psalm 62:1-2
No comments:
Post a Comment