Back from Cincinnati

I know there are a lot of you wondering how things went last week in Cincinnati so I thought I would post here, in one spot, so that everyone can keep up to speed.  We drove down on Wednesday for a Thursday afternoon appointment.  In order to save Paul’s time off from work, he worked the morning so we didn’t leave until around 12:30.  I didn’t tell Keyan about going until that morning because she doesn’t usually like to be away from the family but she was SUPER excited to see Hans the dog and to have a sleepover at Aunt Bonnie and Uncle Alan’s house.  She could not wait to get out of here!  Anyhow, the trip was non-eventful and we arrived in time for a little play time and then she was off to bed. 

Thursday morning brought a snow storm to Cincinnati…not necessarily a snow storm by Michigan standards, but everyone was on edge on Ohio!  It ended up being a little slippery by the late afternoon but as long as we went slow, everything was fine.  Paul and I had spent hours hashing out what may happen at this appointment and making sure that the two of us were on the same page as to how we wanted things to progress.  Those conversations were not easy ones..rather heart wrenching actually, but I am glad that we could present ourselves as a united front.  So, the appointment did not bring any earth shattering news, but it was a very important appointment that helped everyone get onto the same page.
In a nutshell, she has continued to loose weight which now needs to stop.  She NEEDED to loose the first 10 pounds but we don’t want her to loose any more so the doctors will tweak her TPN and hope to keep her weight stable.  The other topic of discussion was a plan to get her off of the TPN.  TPN is the IV nutrition and unfortunately it is not a long term solution as it does damage to the liver and kidneys and is a breeding ground for infections.  However, the past three months were the first time in Keyan’s entire life that we did not work on advancing her intestinal feeds…and by far these past few months have been the best quality of life she has ever had.  The proof is in the data!  We have always said the Keyan’s body is happiest when she is not being fed, but we have never done a long term test of that and the last three months showed us quite a bit.  She did have a lung infection when we increased from 7 to 8 mls an hour which could be circumstantial…although I tend not to lean that way.  So, we talked at great length about what all this means and came up with a VERY SLOW plan to increase her feeds…and I mean REALLY slow.  I won’t go into the details because it is a lot of medical jargon, but they have worked out some ideas to deal with her intolerance, depending on the symptoms, and we will go from there.  The overall message from the docs was that while we would all love to get her off of TPN next week,  her very complicated body is not going to allow that.  She is in control of what happens and her body will direct our path. Furthermore the doctors stated the while TPN is by no means an ideal therapy, in some kids, it is all they have.  You deal with what you have!  We still have no root cause for this intestinal failure so to push forward with the same things we have been doing in the past would be negligent.  None of us are willing to sacrifice the quality of life that she has right now, so that means that the plan is a work in progress.  It is one that Paul and I are pleased with, and one that does in fact keep Keyan’s wellbeing in mind.

As we were leaving the hospital hours later, our minds were trying to keep everything straight and our hearts were trying to absorb the impact of the decisions that had been made when we came across a sign.  It read..

“Cincinnati Children’s Medical Center has been ranked by U.S. News and World Report #1 in the nation for their Gastrointestinal department”

I really felt like God was talking to me at that moment.  You see, the further we get down this road of unknown issues, the more I begin to question if we are doing all that we can for our daughter.  We said Cincinnati would be it…we would not drag her from doctor to doctor, or half way around the globe to continue to search for answers.  This is it for us right now and we feel very strongly about it.  However, that does not mean that in the stillness of the night, doubts don’t come knocking at our hearts.  “Have we done the very best for Keyan?  Is there someone else who could help her?  What about a more alternative approach?  Are we missing something?  Are we giving up?”…I could go on and on.  When I read that sign aloud to Paul, I had a peace wash over me that I will cling to from here on out.  “This is it…there is no one better…we are doing everything that we can, and we are doing it to the best of our abilities.”  I know that some would argue with our decision, and that is alright.  It still comes back to the fact that we have been commissioned to carry this very heavy burden and we will be the ones held accountable for her life.  It is up to us, and after our time in Cincinnati this past week, I can lay my head on my pillow at night knowing that all is well.