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April 4, 2011

Sometimes results are not always what you want to hear, sometimes you expect them, sometimes you are surprised by your reaction upon hearing what they are, sometimes you wish you never heard them, sometimes your glad you did, sometimes…

On Friday evening we met with Dr. B, Lucy’s GI motility specialist, to go over the results of her antroduodenal manometry study.  I won’t drag this post out, I’ll cut right to the chase, the results are not good.  They confirmed what Drew and I and her current team of docs already suspected, Lucy’s stomach and small bowel have little to no motility.   The study determined that Lucy has intestinal neuropathy,  the nerves in her small intestine do not function correctly thus causing her small bowel to have little to no function.  Lucy’s stomach and small bowel are unable to function in any way where she would be able to take in and digest nutrients.  Even the small amount of feeds (trophic feeds) that we try to feed Lucy so that her bowel wall is very minimally coated with food to keep the bad bacteria from taking over is going to be a struggle.  Her results confirmed that she also suffers with reverse peristalsis, or backwards motility. We were not at all surprised by this finding, her body has so clearly demonstrated this by the sheer number of gj-tubes placed in the last few months.  The medications that we trialed did nothing to help improve Lucy’s motility, in fact they caused adverse reactions, retching and nausea.  The only real stomach contractions that were detected by the study occurred when Lucy was vomiting/retching, there were only a few very weak uncoordinated contractions of her small intestine noted.  These findings confirmed Lucy’s diagnosis of chronic intestinal pseudo obstruction (CIPO), although Dr. B did say that she does not present like a classic case of CIPO because her findings are so severe. 

Drew and I sat quietly and listened to Dr. B describe what all of the lines and squiggles on the report represented as Lucy snuggled in on my lap complaining of belly pain from sitting in her wheel chair too long.  After all of the researching, discussing, praying, and concern given to this study we surprisingly had very little to say after hearing the results.  Dr. B was knowledgeable and professional, but really couldn’t recommend anything in his opinion that would improve Lucy’s motility.  He told us that based on these study results TPN is our only option.  Due to her dependence on TPN and her failing bowels, life threating infections and liver damage are what accompany this option.   All of our surgery options are even more questionable as they will not help her motility, but may help to improve her “quality of life”, if the risks don’t outweigh the benefits.  He did say that before we consider removing any portion of her intestines, that we should consider colonic manometry testing, this way we may know if it is just part or all of the intestinal system that does not function. Sadly, we feel strongly that we already know the answer to that without subjecting her to further testing.  We all agreed that we need to discuss these findings with Lucy’s current team, and define what “quality of life” means for Lucy.             

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Clara-Leigh said...

Answers are good. Answers you do not want are still good in that you can make a plan......but the plan sounds scary, but it is a plan, and you can move forward, hopefully giving your precious girl some pain relief.
Praying for you all!!

Debbie said...

Wow that's alot of information to have to take in and absorp!

Yes, knowledge is power and with the results known hopefully you will find the tools to help her!

You are being prayed for...for peace and comfort!

Groves said...

Praying for you this morning. **Praying for you.**

Last night I was reading about the persecuted church in North Korea, believers enduring horrific trials in the midst of their faith. This is how I think about you.

There are so many different kinds of suffering attached to your situation. Lucy's suffering, your suffering as you try to help her, your other children's suffering as they watch, the suffering of having to make decisions that no parent wants to face and which have no easy answers.

I can't remember how I "found" you - I think maybe through Maggie Agnew's story? - but I noticed from the first how much trust and confidence you have in the Lord in the midst of everything.

You can be sure that you are honoring Him greatly in all this. I am so sorry that you are having to go through it and I certainly don't understand *why* you have to - but I know you ARE honoring Him. I wish the suffering would not be there and the burden would be lighter. It really does not seem fair, and it requires a level of trust that is far beyond the usual.

None of this makes the road easier, and it does not make the endurance more bearable. I just want you to know that your faith is shining in this very dark place, and that your confidence in God is not going unnoticed.

Lord Jesus, please make a way where there is no way. Light the path for the Marletts.

"He reveals deep and hidden things; He knows what lies in darkness, and light dwells with Him." Daniel 2:22

On your team & so sorry your Lucy is suffering,

Cathy in Missouri

(Just wrote another comment, but it disappeared into cyber-space when I tried to post it, so here goes the 2nd try...if you get the other one, too, you'll know why they were similar.)

Heather said...

It is so hard to hear the answer *out loud* even when you suspected it for so long. I am sorry that this is Lucy's new reality and I pray for your family often. Thank you for sharing so much of your journey with Lucy. I love seeing pictures of her. She looks a lot like Lindsey (they even have the same pacis!!). I will continue to pray that you can move forward in a good direction for Lucy and help relieve her pain.


Cory said...

So wonderful to see you and Lucy today "in the rain." We continue to pray for you and Lucy and the family.

Jessica said...

I'm so sorry. Even though you suspected that this would be the result based on her presentation, it still hurts to hear it out loud, and medically speaking, it is a cheerless picture.

Still, nothing is too little to work with in God's hands. Who knows what he has in mind for Lucy? None of Eithene's drs thought she would still be alive after 2 months of TPN, and she just passed her 2 year anniversary. Yes, she is very sick and with no indication of getting better this side of heaven... but God still has a plan for Eithene, and for Lucy.

Hugs, I know you need them after that meeting. If you want to discuss any of the surgical options, Eithene has tried most of them, and I'm happy to share our experiences.