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An Update and What the Heck Just Happened...

Friday, January 28, 2011

It's nice to be home.  Everybody except Brian went to bed last night at 8pm.  Everybody except Bennett has a cold.  So, it was a fairly sleepless night for all of us except one.   While the three of us were up and down all night, coughing and trying to breathe out of noses (or waiting for the Sudafed to kick in), Bennett slept like a log.

In fact, Bennett slept a total of 15 hours last night...and only then woke up when we decided to wake him up.  We think he was just exhausted. 

You might not think two nights at the hospital is all that life-changing or that big of a deal. It's just like camping over the weekend, right?  Throw some stuff in a bag and get admitted.  Get discharged and carry about your life.

Well consider during your "camping experience", your baby gets attacked by wild grizzlies.

Yeah, that's the kind of "camp" experience we just had.

I am glad to made the choice we did (as though we had a choice).  I am satisfied that we are definitely in a better place with Bennett's health than we were two days ago.  But boy was that not fun.

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I have a million thoughts I'd love to process in the next few days about our hospitalization.  But I'll back up and explain what exactly happened.  Some of this will be repetitive, since I updated as we went along.  But some of it may fill in holes that I didn't have time to address.

What the Heck Happened:
Tuesday night seemed normal until we noticed Bennett's rectal prolapse wouldn't go back into his body.  Unalarmed (since Bennett's rectal prolapse happens pretty often), we gave Bennett's bowel time to return to its normal place.  When it didn't, we called the GI doctor on call.  When the GI doc on call recommended us to go to the ER immediately, we knew it might lead to a hospital admission.

It was wonderful to know we had neighbors who have repeatedly offered to help us whenever we might be in a situation like this.  Our sweet neighbor Judy came to stay with Oliver (who had fallen asleep by the time we got word we needed to go to the ER).  Judy was able to fill in for us so we could both go to the ER.  (One of the things we have learned is how important it is to have each other there to make health decisions whenever possible, especially in emergency situations.)

Once at the ER, it was relatively quickly that we realized that the ER doc, as capable as he was, wasn't going to be able to get the rectal prolapse to go back inside as well.  Rectal Prolapse is kinda like a hernia.  It can be pushed back in if the abdominal wall is relaxed.  However, each time anyone tried to push the prolapse in, Bennett's natural response was to push it back out.  So, we were at an impasse.

We discussed the option of being transferred to Cook Children's in Fort Worth, for continuity of care.  However, the GI doctor on call at Cooks said we should not drive that far, but get under the care of the nearest pediatric surgeon as soon as possible.  Everyone's fear was that the longer Bennett's prolapse stayed out, the more likely he was to lose blood flow to his bowel and the more likely the bowel might actually die off.  If this did happen, Bennett would lose part of his bowel, which could be devastating.

So, it was decided that the Children's Hospital at Scott and White in Temple would accept us.  We asked the doctor if we had time to go home and pick up our other son, or at least pack a bag.  He wanted Bennett to go straight from Hillcrest Hospital to Scott and White but did tell us that in the amount of time it would take for them to discharge us, we would have time to run home (we live very close to the hospital in Waco) and pack a bag.

Brian left quickly to grab us some essentials while I got on the phone with a few close friends to find out if they could help us care for Oliver.  I focused on planning for Oliver one day at a time.  Our friend Lindsay came immediately to our house and picked Oliver up to take him back to her house, the home of one of Oliver's best friends.  He would stay there through the following day until we knew more. (Brian was able to say goodbye to Oliver, who was practically still asleep, and was able to relieve Judy from her nighwatch duty).

Brian returned to the ER shortly before we were given the ok to drive to Temple (fortunately, the doctors were supportive of letting us drive Bennett down the hospital so we could have our own car there - Our friend David helped us make this happen).

We arrived in Temple after about a 30 minute drive.  We were taken straight to a room that was prepared for us.  I noticed when we came in that the room had signs on the outside of it that said, "Isolation" with pictures of someone wearing gloves and an apron.  I knew it was because Bennett has C.Diff, a highly infectious bacteria.  I knew once we entered into the room, we were gonna be stuck for a while.  Bennett would not be allowed outside of the room except for procedures for our entire time there.  Because he has C.Diff and was in isolation, the hospital would not allow him to walk in the hallways or visit the play room at all during our stay - however long it would last.

A Surgery Resident came to visit us almost as soon as we arrived.  Scott and White in Temple is a teaching hospital for Texas A&M so we saw lots of residents while we were there.  After the resident came in, the Attending Physician and Pediatric Surgeon came in to assess Bennett.  It was then that we heard the plan for what was going to happen during our time there.

By the time the Pediatric Surgeon arrived it was midnight, more than 4 hours since Bennett's rectal prolapse had first come out, and the rectal prolapse was just starting to go back in on its own.  One thing we learned as that Bennett's sphincter muscle had not closed on the bowel, so Bennett had not lost blood flow and would not lose his bowel afterall.

The Pediatric Surgeon explained that Bennett had shown stage 3 rectal prolapse (the fourth stage is the worst) and that his rectal prolapse would only worsen without treatment.  She told us about our surgical options but said she didn't want to do surgery if Bennett had an active C.Diff. infection.  She suggested that we get the Infectious Disease doctor involved and see if we could clear up his infection.  If we could, then we would go forward with surgery.  In the meantime, we would stay in the hospital to monitor Bennett's rectal prolapse and make sure it didn't continue to be a problem.

Everyone was aware that Bennett's rectal prolapse (a classic sign of Cystic Fibrosis) was made worse by the fact that over the course of weeks, Bennett had been straining to have bowel movements up to 10 times a day.  The Pediatric Surgeon indicated that surgery might not be needed, if we could prevent the reason behind the rectal prolapse, but she also noted that Bennett's rectal prolapse was pretty severe.

The next morning, the Pediatric Surgeon suggested another idea - to have Bennett undergo a Barium Enema to confirm there was no anatomical reason for his C.Diff.  This Barium Enema would be held the following morning. 

That afternoon, we spoke with the Infectious Disease doctor about options for killing the C.Diff. infection.  She suggested a variety of different ideas to counteract the C.Diff.  She also wanted to do some extensive blood work testing to look at Bennett's immune system and other factors that might be making his C.Diff. difficult to eradicate.  The Infectious Disease doctor indicated it might be worth getting the GI doctor involved.  He would meet with us the following day after the Barium Enema.

By the time Thursday morning came, after which we completed the Barium Enema and after which the doctors had been able to observe Bennett to confirm his rectal prolapse was safe, the doctors started making conclusions.

It was decided that we would treat C.Diff. first through long term medication, and should that fail at any point, we would go forward with a Stool Transplant (we would be the first pediatric patient to undergo this procedure at Scott and White in Temple, if we do).  It was also determined that Bennett will end up having surgery for his rectal prolapse in the future, after his C.Diff. has been successfully treated.

We were discharged with a firm plan on how to deal with both issues, and with the confidence that we aren't going to be left to overcome C.Diff. and rectal prolapse all by ourselves.  It was also decided that Bennett would continue his Vancomycin for several more months and would not change his formula afterall.

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It has definitely been a difficult few days.  But it is pretty amazing how quickly things get dealt with in the hospital.  We were able to consult three different doctors within 24 hours, get numerous tests completed and come up with a very solid plan for dealing with Bennett's reoccurring issues.

Had Bennett's rectal prolapse not sent us to the hospital, Bennett would still be suffering.  We would still have another three weeks to wait until we saw the Infectious Disease doctor to come up with a plan for how to overcome his C.Diff.  And, we would not have any plan in place for dealing with his rectal prolapse.

As much as I hated being inpatient, it was truly a blessing in disguise.  We have some great and very competent doctors at our fingertips helping Bennett get healthy.

For one of the first times in months, I am incredibly hopeful for Bennett.  Cystic Fibrosis is a progressive disease, so we do know what lies ahead.  But so far, Bennett has had no lung issues, giving us confidence that if we can resolve this C.Diff. issue and his feeding issues, he has every chance to have a very normal life.

I cried a few times during our hospital stay.  Despite that I am used to have a child with a chronic illness, there is no way I can get used to seeing my child in pain.  But these moments are typically fewer than seeing our child experiencing joy.

We are incredibly thankful for which all that God has blessed us - the wisdom of doctors, many opportunities to see some of the best specialists, loving friends and family who help us on the sidelines, a disease and illnesses that can be managed.  God is good.  God is so so very good.

2 Responses to “An Update and What the Heck Just Happened...”

  1. Breck - I'm so sorry you had to go through all of that, but it sounds like this truly was a blessing in disguise. I'm glad that you now have a plan in place to get Bennett well(and I know how much you like plans!) We'll continue to keep all of you in our prayers. I'm just so glad to hear everything has turned out okay.

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  2. Wow, that was some adventure.

    Things do get dealt with so quickly when you are inpatient, it's just amazing. The fecal transplant is very interesting. I've heard about it. I'm glad that you are all in great hands! You're in my prayers.

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