It was an eventful week last week!  OT, new MidMich pain doc and med, Beaumont pain doc, 2 counseling appts,  Beaumont Liver Team appt, pain doc video appt, UoM Liver Team appt.  Whew!!  It was a long, but productive week and Bethany was amazing for each and every appointment!!

I want to shout from the mountain tops!!  God, the medical teams and most importantly, Miss Bethany have combined their strength, knowledge and sheer fortitude to allow Bethany to be removed from the priority listing for a liver transplant!! 

What does that mean?? 

It means that her liver is healing!!  Yes, she is still very fragile medically, but her blood markers are all coming back into range.  So much so that her MELD score (the score by which transplants are prioritized) has moved so low that she would not be a priority at this point. (When she was very ill, it was almost at the highest point of the scale)  She has completed all of her evaluations with the Beaumont Team and they will continue to follow her in the event that her liver begins to fail again - but for now - she is in the "monitoring" group.  She is still on a lot of meds to help moderate the fluid in her system, and that is being tweaked again this week to help reduce the swelling.   

The NP at UoM was so shocked at her improvement she could barely contain her excitement!  That reaction was based on seeing her just 6 weeks ago - and when she thought about how sick she was several months ago, well, she was even more amazed!!  The UoM team will also follow her as her liver specialist and keep the transplant team updated.  She has also completed the majority of requirements for UoM so having two of the top transplant teams in her corner is really amazing and a double insurance policy if she again needs their expertise.  

What's Next?? 

She currently has four abdominal hernias that are associated with her surgeries and her stoma.  When you see her, you will notice that she looks very bloated - almost as if she were pregnant.  Some of the protrusion is fluid retention, but most of it is her hernias.  They are severely painful, cause her to have limited mobility/motion and are a great source of sadness as there is really no way to "camouflage" them.   She cannot be considered for surgery while she still is retaining fluid (ascites) as the surgeries would not be successful.  She also still has some bleeding (varices) as well, and that condition precludes surgery.  So please keep praying for her continued improvement so that her health will come into line with what is needed for the surgeons to evaluate how to repair the hernias. 

Bethany will continue to work with her new pain doc to ensure that her pain protocol is working for her.  This is really another area of amazing news as she is on a med that she had never tried and IT WORKS!!  The change is amazing....  For any of you that have lived with debilitating chronic pain, you understand the blessing of getting a doc to work with you to find the right pain meds.  It seems that Bethany now has that doc on her team!!

She will continue with OT and PT to improve her functional life skills (bending, grasping, stairs and moving things are still very challenging due to the atrophy from 3 months in the hospital and the hernias).  She really likes her therapists which helps too!! 

Her other health conditions are still present and each of them requires some fine tuning as she continues to heal.  We seek wisdom in how best to proceed as well as for the docs and therapists.  Bethany's case is very complex, but we are encouraged by the support she's received to date and believe there are solutions waiting to be implemented.  She keep working closely with her PCP and the team at UoM to ensure that all of her health concerns are addressed.  

Counseling is helping her forge new lifestyle choices so that she can be more confident in the future.  She is working very hard to make changes in many areas of her life and I am SO proud of her for the progress she has already accomplished.  It's so hard to make life changes let alone also trying to heal! My warrior daughter is fighting like a champion and while there will be no "official" victory line, I know that she feels all of you cheering her on!!   

For now, it's just a matter of keeping up with appointments, therapies and building strength.  I think she might want her car back soon so it may also be time for me to make plans to go back to England!  It will be bittersweet, but she knows I'm just a flight away if she needs me...  🥰