12 July 2010

Update: Colonoscopy Scheduled and A Talk With The Doc

We met with the CF Doctor today.  She was very gracious and spent alot of time with us during our appointment.  It seems she may not have fully heard our concerns over Bennett's repeated "painful poop episodes."

However, after a good 45 minute conference during Bennett's appointment, we may finally be on the same page.  While Dr. D had told us that his pain was something we are going to just have to get used to, it seems even she agrees something is amiss.

The reality is that Bennett has been losing weight (he weighs about a pound less than he did last month during this time)...something no one is happy about.  But we aren't surprised as he hasn't been tolerating his feeds until recently when we diluted his formula.  Diluting his formula meant less calories but at least it all stayed in.

Dr. D, the CF doctor, is concerned about the weight loss and understands the immediacy of fixing this issue.  She ordered two tests on Bennett today: an abdominal Xray (to see if he has any backup stool in his system) and bloodwork (to check to make sure his electrolytes are in order).

She also spoke to us about two other small changes with his feeds that might help: giving him 2.5 enzyme capsules (versus 3) and using the pump to feed Bennett through his g-tube (rather than bolusing him by hand).  Both changes should be good for Bennett but will complicate our already complicated feeding system.

When we asked the doctor about how to go about splitting capsules like this into "halves"....

...she explained that we should do it like one would when they are snorting cocaine.  (It was quite a moment for us as we started listing things in our head to pick up at Target next time we're there: such as a small mirror, a small razor blade, etc.)  But if 2 capsules is too few and 3 capsules is too much, we will do what it takes to give Bennett the best.

The CF Doctor is concerned that Bennett is being fed through his g-tube too fast.  Therefore, she suggested that we use the pump during the day.  The last thing we want is to have him on the pump all day long, something we'll be forced to do if we can't get enough calories into him.  But while this is complicated, it's doable.  We will now have to carry our pump around everywhere with Bennett so that when we feed him, we will have to do so over 30 minute increments.

We spoke with the doctor over Bennett's continued lack of interest in eating/taking a bottle.  We were reassured that this is fairly typical for a CF patient.  Many times, they simply lack interest in food.  Dr. D basically shared with us that Bennett's CF digestive system does not work like other children and that dealing with this issue is likely to be for the long haul.

However, since we haven't ruled out everything, the GI doctor has scheduled a colonoscopy for next week for Bennett.  He will look to see if there is an inflammation or other mechanical issues causing his intolerance of feeds and pain.  Until then, we're going to continue to document everything: Bennett's poops, wet diapers, behavior, feeds, medication changes, etc.

The bottom line is, we still don't know what's going on with his system.  We don't know what to do with the information that he has done so much better on less concentrated formula than on more concentrated as he cannot stay there.  And we don't necessarily know why Bennett cries with some bowel movements but not others...or what exactly his causing his rectal prolapse.

But the good news is, the doctors seem to be listening more attentively and we will get to the bottom of it...eventually.


  1. we've had to split the pills before too, total pain in the arse! i went out and bought those pill organizers (the ones that have monday-sunday on them) and broke up the pills ahead of time. this definitely helped out a lot!

  2. Can you use a pill-splitter? They sell them at Target and I had to once split some very odd shaped ones for the dog and found a pill splitter that could accomodate multiple shaped pills. It worked great.

  3. He had to split pills too, annoying! I used the flexible medicine cups that come on the top of childrens medicine. I opened up a capsule in one then had another that I eye-balled half into. They are nice because you can bend them when you pour half onto a spoon of applesauce. Glad you're going to be getting some answers for Bennett but I can imagine it's a lot of change and kinda hard. Hang in there!! <3

  4. I'm so sorry to hear that Bennett continues to have pain. :( Hard to believe that he has lost a pound. I hope you get answers quickly. Hugs to you all!

  5. We use little plastic medicine cups to split the enzymes in half--we just eyeball it. Sorry to hear he is still in pain but I am also happy to hear you are getting some answers! We will be praying his colonoscopy goes smoothly!

  6. I have something you might like to try? E-mail me.
    I can send it to you.

  7. oh yeah and: it is possible to get a west to put the pump and food in that he can wear when he gets his feeds. The west has a pocket on its back the kids even play with them on during feed time.

  8. We used the little paper ketchup cups (from places like Burger King), and at night just got enough ready for the next day. We put them in a tupperware to seal them. Also, have they thought about switching enyzmes? I know you were also on the Pancrecarb. Was he better on those? Just curious. Take care.


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