C Diff Update University of Chicago Visit

Well, after a long day that started at 3:00 am when the alarm went off this morning, we finally feel like we are on the right path to putting all of this mess behind us!  We loaded up in the car and headed to Chicago which was actually a very smooth, nearly traffic back-up free ride.  The physician we met with today, Dr. Stacy Kahn, a pediatric GI specialist and associate professor at the University of Chicago is amazing!  She was so nice and receptive, open and informative.  After going over Grant’s case history with us and just general discussions we discussed the option of the stool transplant or the recently, formally named fecal microbiota transplantation (FMT).  The first item to note is that before we could go forward with the FMT, Grant would have to have another active, C Diff infection.  At this point, he does not because he is on medication.  History in Grant shows that his infections normally reappear at day 7-14 after discontinuing any medication.

Dr. Kahn did not agree with Dr. Werlin’s (of Children’s Hospital in Milwaukee) protocol of having Grant continue the medication for the next four months with 5 day breaks in between each month.  Instead, our action plan is to complete two months of medication (Grant just completed his first 30 days and is currently on day 1 of his 5 day break before starting month 2).  This will give both her and us time to prepare for the FMT if it is necessary.  There are some approvals still needed at the Comer Children’s Hospital and some hoops we will probably have to jump through with our insurance.  After Grant has completed his 2 months in mid-June we will just wait.  We pray the C Diff is gone for good and we don’t even have to cross this bridge but if it does return for the 6^th time it is very likely we will have the FMT God willing with cooperation from our insurance.

Dr. Kahn talked more about the procedure itself.  Most likely we wouldn’t have much time leading up to preparing for the procedure.  We would have to be ready to go when and if Grant were to test positive again.  He would then be admitted to the hospital the night before the procedure and given an IV and have to fast.  The FMT would be performed with the use of a nasogastric tube being placed in his nose, down his throat, and into his stomach.  The donor stool slurry is then placed in the tube.  We would most likely be there for 48 hours for observation.  Dr. Kahn informed us that Grant would only be the 4^th documented case of a FMT in a child and the first at University of Chicago/Comer Children’s Hospital.

Most of all, we thank everyone for their continued thoughts and prayers.  They are working!  Please continue to keep us in your prayers that we don’t have to resort to this but if it does come to this our prayers have already been answered… for this all to come to an end in some way, shape, or form.  We finally feel like there is a light at the end of this tunnel one way or another and you are all to thank! 

Grant and the penguin eyeing each other up

And it wasn’t all business… we even snuck in a trip to the Shedd Aquarium so there will be some more pictures to follow from that!