Before I get into our continued C-diff saga, I want to ask for prayers for sweet Isaiah. He is 20 months old and has Tay Sachs. He only has a short time left. I am sure his parents would appreciate prayers and notes of encouragement in Isaiah’s caringbridge guestbook. http://www.caringbridge.org/visit/isaiahproject.

(After I posted this journal, I checked Isaiah’s site and read that he passed away tonight. My heart goes out to this family. We met them at last year’s Tay Sachs family conference. Isaiah was an adorable one year old when we met him. Every time we hear of another child with Tay Sachs passing away, our hearts hurt. This one is particularly hard.)

We took Carmen to Children’s to have her feeding tube replaced today but the doctor needed additional supplies so we rescheduled for Tuesday. We decided to do this bedside, without anesthesia. We are not sure Carmen would do well under anesthesia and might not be able to come off a breathing tube so bedside seems to be a better choice. Hopefully she will not be in pain.

We talked to Carmen’s gastroenterologist about the C-diff. She said to continue the Vancomycin and the VSL#3 probiotic. I have been giving Carmen 1 packet of VSL#3 per day but the doctor is going to look into a larger dose. She said they give some elderly people 6-8 packets per day! Considering that each packet cost between $1-2, that is not cheap. We have always thought that if we can’t get rid of the C-diff with oral antibiotics, the next step would be IV antibiotics. The doctor said that IV antibiotics are less likely to get rid of C-diff than oral antibiotics. That is not good news because we are running out of options.

The doctor did say that perhaps changing the feeding tube would help as C-diff might be colonizing in the tube.

And Dave’s sister suggested we give Carmen a teaspoon of raw apple cider vinegar every day to get her pH balance to a good level so that the probiotics can work.

C-diff is contagious and we have been concerned about anyone catching it from Carmen. The doctor said that the people to really be concerned about are the elderly and immunosuppressed. She said that babies often carry C-diff but have no symptoms so young babies are not as much of a concern. (I read that 80% of babies have C-diff but do not show any symptoms so it is not considered problematic- interesting, huh?)

We do not want to sequester Carmen away for the rest of her life. Or turn into hermits ourselves. That is a seriously depressing thought. We don’t want to put others at risk either. So, please, please pray that the C-diff goes away!

C-diff is a seriously frustrating condition!!!!!!!!!!!!!!!!!!!!!!!

Lauren and either Dave or New York Grandpa (I can’t remember who!) made this bracelet for Carmen.

This Post Has 5 Comments

  1. Kathleen T

    It just sickens me that hospitals are not doing anything to prevent this virus from spreading. In most cases, elderly patients that go in the hospital with another ailment eventually catch the c-diff virus and more than likely it will kill them. The same thing happened to my father. Even though he was a long-time cancer patient with multiple health problems, I feel the c-diff he was infected with killed him. What is the point of going to the hospital? Especially, when we are seeking care and help. Instead, we go to the hospital only to get even sicker, not better! This is a major concern and I think the government should get involved by ending this outbreak in hospitals. Someone must manage and observe how these hospitals operate and how they care for their patients with the disease. This virus should not be in the hospitals. It must be stopped!

  2. Jana

    cdiff naturally exists in all bodies . It is the wide use of antiobiotics that kill off the healthy flora in your body that allow cdiff to grow. It is not caused by hospitals but by the overuse of antiobiotics. So stop blaming the hospitals.

    1. CD

      Not True, Although many silent carriers exist, without symptoms, everyone DOES NOT carry the bacteria/spores. Hospitals can be places of likely infection, but all community areas are now becoming at risk for C-diff exposure.Check your information!

  3. erinnorberg

    my mom is currently in the hospital and we are very concerned about her. i am now looking into the vsl3 and will be pushing the doctors to do a fecal transplant. they usually do it from a first generation relative, so in this case, i would be the likely donor. talk to your doctor about this. it’s relatively new treatment, but they are finding it has a high success rate. it’s weird, i know, but i’m planning to really push till we get this done.

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