There are just a couple things that we’ve learned over the years. 

We never or rarely leave Emily alone in the hospital. Too many things have gone wrong and she’s not able to defend herself. You do not want to be away while you have that chance to see the team. 

Make your loved one your priority. 

Always keep a list of questions, concerns or even a journal. We forget through the high stress times. 

We have found the best way to advocate for ourselves is to first, have a good PCP (Principal Care Provider/General Practitioner) with whom you have established a trusting relationship.  It's harder to find these days, especially with more doctors retiring.  Lining up the doctor's interests with your needs will yield better results.  

If your GI doctor isn't being very responsive, don't be afraid to ask for a referral to one of his/her associates.  Some GI doctors are happy with just doing endoscopies and colonoscopies, while others take an active interest in more complex cases.  It is definitely worth asking.  The GI doctor we had been working with had an associate who interned at one of the best intestinal transplant hospitals (UPMC) and so we asked to be handed off to him.  The new doctor's engagement with us has been invaluable, plus he gets back to us right away.  Lining up the doctor's interests with your needs will get you much better results.  The short of it:  Don't be afraid to ask for a referral to one of the associates who likes the harder cases. 

A Nurse Practitioner who is willing to be actively involved can be very helpful, but the MD initials make a difference when you're petitioning to be seen by one of the premiere providers of intestinal solutions.  Our GP wrote several letters on my husband's behalf before we were seen at UPMC.  Choosing an institution that looks at other alternatives, (rather than going straight to a transplant) is highly recommended, and we were so grateful for that expertise!

Be prepared to write letters, being as succinct as possible, highlighting your needs in a request to be seen.  Keep to the high points — try not to complain about everyone who hasn't been able to fix the issue, just let them know it's been a journey (like "x" years) and you feel at the end of your rope.  Let them know if you have heard good things about whomever it is you are wishing to see.

Most of all — be persistent!  Some hospitals that are out-of-network take special needs cases and have foundation-type assistance.  Also, look to see if there is a Family House (like a Ronald McDonald house, but for transplants or longer hospital stays) in the area you are planning to visit.  The camaraderie of other individuals going through similar situations is invaluable.

PS - if the solution takes awhile, be patient.  You've been dealing with the problem and your body may take a while to adjust.  And remember to express thanks, in writing!

Write down all questions, concerns and topics you want to discuss with your doctor(s). Those who advocate for us can add their own notes to that list. or even keep their own notes. This could mean having a shared document, or even a notebook that is kept in common spaces. Being at the doctor's office is an overwhelming and often emotional experience. We put on a brave face, for both ourselves and for those around/with us. During especially difficult conversations, the reality doesn't set in until after we leave the doctor's office. Having a solid point of reference keeps the conversation on track while we have face to face time with the doctor.