27 January 2011

Hospitalization Update Day 1, 12:45am

I'm really tired now.  I have been up since 6:45am.  And didn't go to sleep until about 2am.  However, most of the day I have felt great.  Adrenaline has pumped through my veins all day.

We finally met with the Infectious Disease (ID) doctor this evening around 5.  The ID doc was good and seemed to hear our needs.  She said that basically the course of antibiotics Bennett was given, in the order it was given, was typical protocol for treating the C.Diff infection when it persists.  However, she said, if it persists after that, the "typical protocol" ends and at that point, things become experiemental.  The bottom line - there isn't really anything else left to do except for trying things other people have used with success (these are things that usually have been studied on adults - The ID said she had not really seen very many kids with relapses of C.Diff.). 

So, the idea of having Bennett "pulse" an antibiotics - few days on, few days off - was a suggestion.  The goal would be to kill off the C.Diff. spores little by little.  Another idea would be to keep Bennett on a low dose antibiotic for a very long time in order to help him continue to fight the infection.  A few other ideas she threw out were to have a "stool transplant" (oh yeah, there really is such a thing).  A stool transplant consists of using donor stool to help replace the C.Diff. bacteria in Bennett's stool.  And lastly, we could trying a new medication called Alinia.  (Almost every option the ID doc mentioned is listed here:

The ID doc isn't sure which route to take but plans to do more research tonight and look at Bennett's chart to decide.  I think that one way or the other, we're likely to be sent home with some type of oral antibiotic to use for a time.

At first, I was disappointed by our visit with the doctor.  She brought us no breakthroughs or real answers.  I so long for someone to give us the magic key or medication for correcting the C.Diff.  However, it is clear that we are closer to getting to the end of all of this.  It's obvious that the ID doc is well informed and will help us figure out what to do next should her first suggestion not work.

At this point, we will just wait to hear from her tomorrow.  She also suggested having the pediatric GI doctor here in Temple come see us.  I'm happy to have a second opinion, especially when I found our GI doctor in Fort Worth seemed less than interested to find answers for us.  We will see the GI doctor tomorrow.

We still don't have a good timeline of when we are likely going to be discharged.  Bennett has a Barium Enema tomorrow at 9am.  After that, we will meet with each of the doctors.  If they are happy with Bennett's condition and feel it is safe, we will be sent home tomorrow.  However, I'm feeling like it won't happen until Friday.

I was finally able to take pictures today of Bennett that I will post on the blog tomorrow.  My eyes are droopy and making it difficult to want to stay up to upload them to the blog (my apologies to my late night friends).  I am sorry if I am missing large chunks of information of our situation in the hospital these days.  Bennett needs my help often so I sit down to type how we are doing as much as possible.

I will quickly share that Oliver came to see us tonight.  It was wonderful!  Oliver spent last night and the entire day today at one of his best friends' house.  Tomorrow, he will visit with another best friend.  At this point, we think he probably just thinks life is an adventure and he's getting to play with friends all the time.

Brian went back to Waco to take care of Oliver tonight.  He will also return to school tomorrow.  However, he will be back tomorrow night (if we are still here) to bring Oliver to visit us.  Seeing them both will be the highlight of our day, I'm sure.  Bennett *loves* Oliver and showed us some sweet smiles when Oliver was around that we hadn't seen all day.  The great thing about Oliver is he has a great sense of humor.  He can laugh at anything.  And Oliver, unaware of what Bennett has been going through, can simply tear into laughter that makes Bennett want to laugh as well.  I know seeing Oliver today was healing for Bennett.

As far as how Bennett is doing, he is doing well as expected.  He was given an IV late last night and was told "no food" until 3pm today.  The doctors wanted to make sure he was prepared to go to surgery if they determined this would be necessary.  So, Bennett can't full play with any toys (one hand is in the sling) and cannot walk about very easily (since he's tied up with cords).

Bennett's was restarted this afternoon at half of what he normally eats before starting him on full feeds tomorrow after his enema.  The doctors ordered *alot* of bloodwork today.  So, Bennett was poked no less than 5 times in an effort to get enough blood.  Brian took Bennett to the room where they draw blood and said, almost through tears, that he was seconds away from asking the nurses to stop trying anymore.  He said he watched Bennett scream to exhaution and felt like to continue would have been torture.  Needless to say, Bennett is so tired of being messed with.  He is hungry and off his sleeping schedule.  I couldn't think of a worse experience for a 16 month old.   I know its to help him get better, but he's miserable here.  In addition, I might add, he continuing to have his same C.Diff. symptoms - projectile vomiting and rectal prolapse.

How am I doing?  I'm doing ok.  I haven't had much time to reflect on my own thoughts.  I'll write more about me tomorrow.  But right now, I just want to sleep.
Good night!  (so sorry if this post is, in any way, incoherent!)

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