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Hospitalization Update Day 1, 7:19am

Wednesday, January 26, 2011

Well, I have had a few hours of sleep sleeping with my hubby on a not-so-comfortable-too-short-for-a-grown-person-barely-bigger-than-a-twin-size hospital bed next to Bennett's crib.  The staff here are really quiet and came in and out last night without much noise.  Brian and I have turned on the "white noise" feature on his cell phone so it does provide us some insulation from the random noises in the hallway (noises like carts rolling by, kids screaming, nurses paging doctors, etc.).

At a check early this morning, Bennett's rectal prolapse seemed to have returned to his normal place inside his body like it should be.  This is good as it gives us time to figure out what to do.  If you had seen it last night, you would have noticed a large red piece of tissue protruding from Bennett's bottom.  Last night, it was the size of a large strawberry.  It was so large that his little butt cheeks were being pulled apart enough that he didn't even have a butt cheek.  It was pretty sad to see. 

Bennett wasn't uncomfortable, although he wouldn't sit down, of course.  Even after Bennett was laid in bed and had begun falling asleep, this large mass from his bottom stayed outward.  We knew it couldn't continue to do this without the risk of infection or loss.

Last night, the concern was if it didn't resolve itself and couldn't be pushed back in, the tissue did run the risk of dying.  So, at the ER we were being told there is a good chance Bennett would have immediate surgery to repair his sphincter, the tiny muscle that keeps his anus closed.  They are afraid that his sphincter is just very loose, making it hard for him to close his bottom when he is done pushing bowel movement.

This issue of a loose sphincter worked in our favor last night, though.  Because it is so loose, once the bowel moved outside of his body, the sphincter did not shut which kept the blood supply to the bowel that was on the outside of his body.  If his sphincter had shut, he could have lost blood supply and potentially lost some of his bowel.

Since the rectal prolapse has returned inward, we are now able to better assess our options.  Here is what the pediatric surgeon told us last night...Dr. Maddox said that usually the options are to:
1.) go to surgery to tighten the sphincter muscle making it difficult if not impossible for him to have rectal prolapse in the future,
2.) go to surgery to remove the tissue that is protruding from his rectum so that his bowel cannot come out again.

At first, our desire was to go with option #1 - to repair the sphincter.  However, Dr. Maddox said her concern was if she did this and Bennett continued to have issues with C.Diff., it could prevent the C.Diff. toxins from getting out and could cause them to potentially build up in his system.  If the C.Diff. toxins built up in his GI system, we could have a life-threatening situation in our hands.  We would likely run this risk for the rest of his life if he contracted C.Diff. again.

It is everyone's desire to fix the C.Diff. - the main culprit of many of his symptoms, including his rectal prolapse.  The reality is, if there is no C.Diff., there is a good chance (although not 100% chance) that the rectal prolapse will resolve on its own and will not get worse.

We had been told by our GI doctor at Cook's that we would be referred to the Infectious Disease doctor.  However, when we requested an earlier appointment than the one that was given to us for more than three weeks away, we were told that our GI doctor didn't feel it necessary and would be satisfied for us to wait.

Brian and I, on the other hand, were not satisfied.  We are not satisfied to wait three additional weeks to meet with a specialist who could potentially help Bennett resolve an infection that he has had for a total of three months out of the last six, an infection that each time he gets significantly raises his chances of getting again, an infection that keeps him feeling yucky and pooping all day.

But, we resolved that if we had to wait, there was nothing we could do.  We decided to focus in on what we could do, changing his formula.  So, I was speaking with the GI doctor's nurse even as late as 6pm (a few hours before we were admitted to the ER) about getting him new formula.  What I really wanted to talk to her about, though, was getting Bennett in to see the specialist sooner.  :(

Well, we're not going to need to wait to see the Infectious Disease (ID) doctor any longer.  Bennett is going to be evaluated this morning by them.  It won't be the ID doc from Cook, since we are not in Fort Worth but in Temple instead.  But we have heard the ID doctors here at Scott and White are very good.

So, we shall see.  His/her determination may shorten or lengthen our stay.   It will be this doctor's recommendation that will put us on a course for resolving the C.Diff.  I truly have no idea what the doctor will want to try.

Our greatest fear is that the doctor will want to repeat what we have already done...or will have no new solutions.  We have already voiced our concerns that we don't want to be sent home with new medications and a "wait and see" approach.  This has been done and has not been successful.  At this point, we need to be aggressive - in order to give Bennett a chance for success.

7 Responses to “Hospitalization Update Day 1, 7:19am”

  1. praying for your family! And for a positive approach with the Cdiff and prolapse...hugs!

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  2. Good for you for continuing to stand up for yourselves and Bennett. I know that part of the fight has to be exhausting too, but it sounds like you are sticking to your gut. Looking forward to more updates. Love you guys!

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  3. Keeping Bennett and all of you in our prayers.. heres to a day of answers and good health for your sweet little man! xxx

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  4. I just read your blog! I'm so sorry this is happening. Your family is in our prayers.

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  5. Praying for all of you today, Breck. Bennett is lucky to have parents like you and Brian - you are so good about fighting what's best for Bennett. God knew what he was doing when he gave Bennett to you. Hang in there - we've got our fingers crossed for you!

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  6. Sending lots and lots of prayers your way. xo

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  7. Oh my goodness, I had no idea you guys were in the hospital until just now. I'm so sorry to hear this and my heart just hurts for little Bennett. There is nothing harder then watching your child suffer and feel like there's nothing you can do. I pray that you and Brian make the right choice but I agree with you, the wait and watch approach is not being aggressive enough.

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