It's been a rough day; the news we received was a shock to say the least. Now that we've had a little more time to begin processing this challenging news, I'm able to share more details..
In restrospect, maybe we should have assumed this could be a possibility since Dr. S's desire to be present was so he would have a "visual roadmap" in case surgery was unavoidable and the section of bowel was close to the skin. In everyone's mind the worst case scenario would be the need for surgery to remove the section of nonfunctioning bowel; definitely an option no one was looking forward to.
So now, our hope is that the Domperidone will wake-up the intestines; increase movement/contractions of the bowel to promote movement through the GI tract. Domperidone is the non-FDA approved drug which is a compound drug, therefore it won't be available until tomorrow. Unfortunately, the doctors say they don’t hold out much hope for it to work.
We will see Dr. A again on Monday at which time he will reevaluate the situation (if the Domperidone is going to work, we should see indications at this point). Ron will remain on a full liquid diet until then.
If the Domperidone does not work, he will permanently be on a full liquid diet and will also be put back on TPN (possibly just a few days a week in order to keep him "tanked up").
Ron slept pretty much all day; waking at an early hour get to Presby by 6AM and then the anesthesia used during the 2 hour long procedure. He was pretty out of it when Dr. A shared his findings with me and I was so thankful he slept for the long ride home. I needed that time to allow God to wash over me as I grappled with my own emotions. I put in one of my favorite Selah CD's and allowed the words to comfort my battle weary soul. I was praying he would sleep and not ask me any quesitons until we got home (where Ryan was waiting to offer extra support as I broke the news).
As we're coming out of the fog, we've thought of several questions to ask Dr. A, please feel free to send us any questions you have and if we don't have the answer, and haven't thought to ask that question, we will!
Questions we've posed to Dr. A so far:
What are the long term ramifications of this?
Will his condition get worse, or pretty much stay the same?
Will he ever gain back strength? stamina? Or if this drug doesn’t work, has he reached his max potential?
Will he ever be able to eat “real food” again?
How will he be able to keep up nutrition?
Do you have a dietitian you recommend?
Obviously, he’ll have to have a PICC line put in; when and where will this take place?
What about the vomiting that he’s had, even though he’s been on full liquids?
I'll share his answers when I receive them.
Thanks for your love and support!
Christie
"God will always give what is right to His people who cry to Him night and day and He will not be slow to answer them" Luke 18:7
"Do not be afraid or discouraged. For the Lord your God is with you wherever you go." Joshua 1:9
(thanks Kay & Laurie)
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