Ok...spoke with Edmonton this morning...we went ahead and capped her drain so no bile can drain out again. So far a few hours later she's been doing well thankfully with no intense chest pain preventing her from standing straight occurring yet.
Unfortunately the weekend was not as good as I had hoped with her constantly suffering pains in her chest around the drain site causing her to be unable to lay flat or stand up straight, off and on. No reason I could find for it to start or stop randomly as it had. Her tummy issues have become a major issue and she can barely leave the bathroom or go far from one either and is up all night with it causing her alot of pain and nausea to accompany it, as well as severe burns on her skin. They are at a loss as to what could be causing all that though. The previous stool samples we did ruled out virus and C-diff, but the other tests we did rule out it's the bile causing the issue as well...yet her skin being burned by it kinda indicates a high acidic content....especially enough when I try to put stuff on it she screams and screams and cries and shakes and has body tremors so bad from the pain...it's not a normal rub rash...I've never seen her in that kind of pain before...
She will be unable to attend school with these issues still though obviously or resume normal activities....so not sure what can be done to help her or where we go from here. We had to work around things for our outings this weekend, and postpone things hours till her stomach would settle enough that I felt like we'd have enough time to do stuff if it wasn't right near a bathroom, and that was difficult to do and judge, and not possible to do as an everyday thing.
She suffered a major headache and bladder infection symptoms for a bit last night as well, and wouldn't eat in the evening due to pain, bowel issues and nausea, but thankfully those settled right before I took her into the ER saving us that trip; not sure if the codeine I gave her helped both issues or what.
I was also informed we'd not be admitted if we are sent up to Edmonton today though...so at the last minute of course I will have to figure out accommodations for who knows how many days as they want to monitor and do tests on her as an outpatient unless they have to immediately remove the drain and replace it.....they are not making this easy for me, after already missing a week of work after only being back 3 days and to put out so much more money now to be up there and miss more work after so much missed these last few months... Plus poor Feeny has missed so much school...She was struggling before in trying to keep up and learn to work without an aid helping for the first time this year, and now she's barely attended school since end of January ..I can only imagine just how far behind she is... :(
So we are still in the wait and see stage...maybe more answers after her afternoon appointment possibly, but unlikely. I wish I could just fix her so she didn't have to continue to suffer for so long... Edmonton can do one more test if we went up there, injecting a dye into the tube to see if there are any partial obstructions etc... but won't have her go up unless she is back to where she was last week with constant, consistent pain etc... I have had my bags packed and been living out of our suitcases for a week though, lol. And will do so for a few more days until they figure out what we can do, and if we need to head up to them or not.
Unfortunately the weekend was not as good as I had hoped with her constantly suffering pains in her chest around the drain site causing her to be unable to lay flat or stand up straight, off and on. No reason I could find for it to start or stop randomly as it had. Her tummy issues have become a major issue and she can barely leave the bathroom or go far from one either and is up all night with it causing her alot of pain and nausea to accompany it, as well as severe burns on her skin. They are at a loss as to what could be causing all that though. The previous stool samples we did ruled out virus and C-diff, but the other tests we did rule out it's the bile causing the issue as well...yet her skin being burned by it kinda indicates a high acidic content....especially enough when I try to put stuff on it she screams and screams and cries and shakes and has body tremors so bad from the pain...it's not a normal rub rash...I've never seen her in that kind of pain before...
She will be unable to attend school with these issues still though obviously or resume normal activities....so not sure what can be done to help her or where we go from here. We had to work around things for our outings this weekend, and postpone things hours till her stomach would settle enough that I felt like we'd have enough time to do stuff if it wasn't right near a bathroom, and that was difficult to do and judge, and not possible to do as an everyday thing.
She suffered a major headache and bladder infection symptoms for a bit last night as well, and wouldn't eat in the evening due to pain, bowel issues and nausea, but thankfully those settled right before I took her into the ER saving us that trip; not sure if the codeine I gave her helped both issues or what.
I was also informed we'd not be admitted if we are sent up to Edmonton today though...so at the last minute of course I will have to figure out accommodations for who knows how many days as they want to monitor and do tests on her as an outpatient unless they have to immediately remove the drain and replace it.....they are not making this easy for me, after already missing a week of work after only being back 3 days and to put out so much more money now to be up there and miss more work after so much missed these last few months... Plus poor Feeny has missed so much school...She was struggling before in trying to keep up and learn to work without an aid helping for the first time this year, and now she's barely attended school since end of January ..I can only imagine just how far behind she is... :(
So we are still in the wait and see stage...maybe more answers after her afternoon appointment possibly, but unlikely. I wish I could just fix her so she didn't have to continue to suffer for so long... Edmonton can do one more test if we went up there, injecting a dye into the tube to see if there are any partial obstructions etc... but won't have her go up unless she is back to where she was last week with constant, consistent pain etc... I have had my bags packed and been living out of our suitcases for a week though, lol. And will do so for a few more days until they figure out what we can do, and if we need to head up to them or not.