Dr. A's answers to our original questions regarding results from enteroscopy last week:
What are the long term ramifications of this? Not sure as yet.
Will this get worse, or pretty much stay the same? Not sure. If the segment of intestine does not work and the medications don't work, then it may get worse as the segment of intestine gets larger.
Will he ever be able to eat "real food" again? I want him to but not sure as yet.
How will he be able to keep up nutrition? We always have TPN if needed. That is why I wanted another office weight check to see.
Do you have a dietitian you recommend? We used a dietician that the TPN company used. Otherwise I have two others in mind but main issue is if insurance covers.
Will he ever gain back strength? stamina? Or If this drug doesn't work has he reached his max potential? I hope he improves. If the meds don't work then we add on TPN and hopefully he will improve with improved nutrition
Obviously, he'll have to have a PICC line put in; when and where would this take place? We would do it at Presby
What about the vomiting that he's had, even though he's only on full liquids? That doesn't seem to fit with our theory. Hopefully the domperidone will make some positive difference.
How large of section of bowel and exactly where is it located? It is about 10 cm long and dilated to 8 cm. It is in the proximal jejunum - on the images, it appears to be a foot beyond the stomach.
Explain again why surgery is not an option. Dr. S feels that if the intestine doesn't work then taking out more intestine may leave more nonfunctioning bowel segments. Also, Ron's abdomen is not the easiest place to enter to do surgery.
Will surgery ever be an option? This is still unclear. After the enteroscopy, we thought that there was no stricture or narrowing. As I think about it, it is possible that we didn't get far enough. An option may be to refer Ron to Baylor for a special procedure with the intent of scoping the entire small intestine to look farther down than I went to verify that there is no narrowing. I pressed Dr. S about possibility of surgery and we are going to talk about it again.
How will we know if Domperidone is working? Nausea and vomiting should improve or resolve
Can anything be done to "flush out" to get rid of putrid stuff ? We can try a round of antibiotics, such as Metronidazole to kill the anaerobic bacteria.
Why did he do well for so long and now... I agree, this bothers me as well. The time course fits more with narrowing and stricture and not with a nonfunctioning segment of bowel. This is one of the reasons that I am rethinking the surgery option.
Several people have asked me: "why not do a colostomy?" My layman's answer would be: A colostomy is used to void matter once it reaches the colon. Ron's problem is in the small intestine, which is above the colon, therfore this would not help his problem.
Hope this helps with any questions you might have, or this may be more information than you wanted to know!
Christie
"Lord, when doubts fill my mind, when my heart is in turmoil, quiet me and give me renewed hope and cheer" Psalm 94:19 Living Bible (thanks Jim & Carol)
1 comment:
My heart weeps with you and cries out for answers. My prayer continues to be for total and complete healing, for strength and comfort for you all.
Below are scriptures that soothes my soul. Lifting you and your family to Our Heavenly Father's throne.
In His Love,
Lisa
Our cry…
“My soul is weary with sorrow; strengthen me according to your word. Remember your word to your servant, for you have given me hope. My comfort in my suffering is this: Your promise preserves my life. My soul faints with longing for your salvation, but I have put my hope in your word. My eyes fail, looking for your promise; I say, “When will you comfort me?” Though I am like a wineskin in the smoke, I do not forget your decrees. How long must your servant wait? …If your law had not been my delight, I would have perished in my affliction. I will never forget your precepts, for by them you have preserved my life. Save me, for I am yours; I have sought out your precepts. I call with all my heart; answer me, O LORD, and I will obey your decrees. I call out to you; save me and I will keep your statutes. I rise before dawn and cry for help; I have put my hope in your word. My eyes stay open through the watches of the night, that I may meditate on your promises. Hear my voice in accordance with your love; preserve my life, O LORD, according to your laws. Look upon my suffering and deliver me, for I have not forgotten your law. Defend my cause and redeem me; preserve my life according to your promise. May my cry come before you, O LORD? give me understanding according to your word. May my supplication come before you; deliver me according to your promise. May my lips overflow with praise, for you teach me your decrees. May my tongue sing of your word, for all your commands are righteous. May your hand be ready to help me, for I have chosen your precepts. I long for your salvation, O LORD, and your law is my delight. Let me live that I may praise you, and may your laws sustain me.”
God’s answer…
“He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the LORD, “He is my refuge and my fortress, my God, in whom I trust.” Surely he will save you from the fowler’s snare and from the deadly pestilence. He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. You will not fear the terror of night, nor the arrow that flies by day, nor the pestilence that stalks in the darkness, nor the plague that destroys at midday. A thousand may fall at your side, ten thousand at your right hand, but it will not come near you. You will only observe with your eyes and see the punishment of the wicked. If you make the Most High your dwelling—even the LORD, who is my refuge—then no harm will befall you, no disaster will come near your tent. For he will command his angels concerning you to guard you in all your ways; they will lift you up in their hands, so that you will not strike your foot against a stone. You will tread upon the lion and the cobra; you will trample the great lion and the serpent. “Because he loves me,” says the LORD, “I will rescue him; I will protect him, for he acknowledges my name. He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life will I satisfy him and show him my salvation.”
Psalm 119:28, 49-50, 81-84, 92-95, 145-149, 153-154, 169-175, Psalm 91
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