IBD-A MOM's guide to survival
 
After almost 40 hours with no food and only water and a small amount of broth in her belly, my brave little girl overcame her fear and successfully received her first of 10 fecal transplants.  Not only that, she actually administered it herself with her doctor's guidance!  The doctor (Mark or Dr. Mark as Maddy calls him) called us at about 10:00 am this morning to let us know that our donor had provided the first sample for transplantation and that he would arrive in approximately 2 hours but he would call us again when he was on his way.  We distracted ourselves by watching a few episodes of "Wild at Heart" (an awesome family friendly British TV series about a family who moves from England to Africa to breathe life into a run down guest house and start an animal refuge and rehabilitation centre.-Maddy loves it!)
It wasn't until we got the second call that Dr. Mark was a half an hour away that I could literally feel Maddy's heart start to pound.  As anyone who is about to receive a fecal transplant for the first time might react, her mind and body began to feel overwhelmed with trepidation and anxiety.
Once Dr. Mark arrived and received a thorough inspection from Echo, guard dog extraordinaire, Maddy began to get very nervous and felt like she was going to throw up.  We spent about half an hour talking about the procedure and what was going to happen before getting Maddy into a comfortable position in which to receive the enema.  It was at this point that the fear overwhelmed her and she did in fact throw up.  As we all know, throwing up isn't at all desirable at the best of times but particularly not when you haven't eaten in 40 hours.  It took a bit more conversation but in the end she chose to go through with the treatment despite her fear.  On Dr. Mark's suggestion, she also chose to administer it herself and quickly realized how painless it was and that she could in fact do this!  I've never been so proud!  This kid of mine is one tough cookie.  I've also never been more impressed with a doctor in all my experience with medical professionals of all kinds.  Mark was kind, patient, helpful and most importantly, he took his time.  He talked Maddy through all of her fears and ultimately, he made her feel in control.  Maddy was so impressed with him, as were Scott and I.  We had a few more chats, laughs and encouragement before Mark packed up his equipment and went on to see his next patient.  Maddy gave Mark a big hug and thanked him for being so awesome.  Then it was hugs all around for Scott and I too...and of course Maddy needed one last hug.  Now, THAT is how a doctor should be-talk about feeling like old friends!  He made Maddy feel so comfortable and even empowered her to take her treatment into her own hands-literally! 
Maddy had a treatment from the acupuncturist this afternoon and spent the day reading in bed.  She threw up two more times but she was eventually able to eat and hold down her meals and lots of water to rehydrate.  The recommended amount of time to try to retain the FMT for is 4 hours, Maddy was able to take in the entire amount of the transplant AND retain it for 4.5 hours!  You can't ask for much more than that!  What a huge success this first day was!
It was a long and emotional day but we are all feeling optimistic about our experience here in Portland.  And Maddy-well, she is busily making lists of food trucks to visit while we are here...next stop: Voodoo Doughnuts! :-)
 


Comments

Misty
04/29/2013 8:08pm

Very proud of Maddy!! I can't even imagine what was going thru her mind. I have been beside the freund family as Landon took this same journey, I pray that Maddy has great success and healing during her FMT treatment. Misty Shope

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04/30/2013 6:32pm

My 9 y/o daughter was diagnosed with UC in Jan 2012. We have been successfully treating her at home with FT since August 2012. She was also not responsive to meds and is doing amazingly well. Just wanted to give you some support as a fellow mom who is just a few months ahead of you in the process. It does work! And if you feel like you need to do more, continue to do more. Wishing Maddy a speedy recovery and continued good health. Way to go, brave girl!!

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Rebecca Kirstein
05/10/2013 11:42pm

Thanks Misty and Kathy! It is so great to have support and give support to others going through this. It is an uphill climb and we can all help each other. I hope that sharing our experience helps others and I'm so grateful for your support! Thank you so much!!

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