Cincinnati

I know that some of you are checking often for an update to our Cincinnati visit.  I am sorry it has taken a little while.  It was a quick trip with barely enough time to drive down, see the doctors, and drive back!  After much concern and debate about whether or not Keyan would remain healthy enough to take the trip, I was so relieved to pull into Paul’s aunt and uncles house early Wednesday evening with a happy and healthy little girl.  The trip went smoothly…thanks to a portable DVD player…and Keyan was so excited to be riding in the yellow bus. (We borrowed a hummer to make the trip and it happens to be bright yellow, so she thought it was a bus!)

Our appointments were on Thursday and Paul and I were both very anxious about what the doctors would say and what they would want to do.  We spent 4 hours at the TPN clinic, talking to doctors, nurses, residents, ect.  Just as in previous visits to Cincinnati Children's Hospital, everyone was very friendly, very detailed, very reassuring, and great with Keyan.  After hours of discussions and lots and lots of questions, we left learning the following.

~The doctors have asked us to turn her care over to them.  They have talked with our doctors here and everyone is on board with that happening.  This clinic sees only kids who are on TPN or who have weaned off of it.  It is their expertise.  The doctor told us that he is committed to doing his best to figure out why Keyan’s body won’t tolerate or accept food into her gut.  When we asked if they saw this type of thing often, he stated that it is very unusual for a child of her age to be dealing with this without a directly known cause. (obviously not what we were hoping to hear!)  He also said that small bowel transplant is just not a great option.  Ten years post transplant, there is only a 50% survival rate.  And, at this particular point, she is not  a candidate because she doesn’t have a diagnosis. 

~They have discontinued the medications we have been using to control the bacterial overgrowth in her gut.  Dr. Mezoff felt that it was a great plan, but one that was obviously not working, so he wanted to see her without it.  They also recommended stopping a medication we use for GI inflammation in the next week or so.  They are running TONS of lab work, did an abdominal x-ray to check the placement of her J-tube, and made some changes in her TPN.  All of this is coordinated through our doctors here.

  

~Most of you know that Keyan had gained 17npunds in the last 6 months or so and we have had a hard time getting anyone to do much about it here.  Dr. Mezoff is hopeing to not only stop the weight gain, but actually get her to loose weight!  This would make me so happy!  They lowered her calories, and she will only be getting her fats/lipids three days a week.  If they can be successful in getting some of the weight off…it will be a trip well worth our time.  I was thrilled to hear that they thought it was a problem.  I hate the extra weight that she has put on and have been shouting it from the rooftops only to be ignored or pacified with some minor changes.  This was one of the major things we were wanting addressed. 

~So, the plan for now is that they will see her back in the clinic in one month.  If she were to get sick before that, we will take her to DeVos until she stabilizes and than she would be transferred directly to Cincinnati.  They have assured us that now that we have an accepting physician, she would indeed be able to be transferred.  I am skeptical, but have to put some faith in them at this point.  If she were to stay healthy over the next month, than sometime after that, they would like to electively admit her inpatient for 2-3 weeks so that they can do further testing, procedures, work on condensing her TPN time, and be able to get ”down and dirty” in order to figure out the cause of her intestinal failure.

That leaves us feeling very overwhelmed.  I am so thankful to finally meet this team of doctors and have them meet and see Keyan.  I think that the changes they are putting in place are great ones, and their plan is right on for understanding Keyan.  Unfortunately, they have to basically start from scratch in order to maybe give us some answers.  Turning her care over to them is great in theory, but logistically just seems like a nightmare to me.  Choosing to admit her to the hospital, where she will be in isolation just about kills me.  You all know how I ache for some quality of life for her…this doesn’t necessarily feel like a lot of quality.  However, it seems as if we have no choice.  When I start to think about the logistics of traveling to Cincinnati more frequently, it makes my head spin.  Having Cincinnati involved means double the phone calls, double the paper work, lots of opinions, and a lot of navigating for me.  I feel like I am choosing Keyan over the other kids and that is a choice that doesn’t feel very good.  The school system is asking if she will be staring school or not right away in the fall…how am I to know?  I feel like I am trading her one life for four others.  I know that it seems overly dramatic, but these are decisions that just don’t have good answers.  We have to give Keyan a fighting chance, but it will not be easy.

The other nagging feeling I have is that Cincinnati has only ever seen her feeling good.  They have not had her in their hospital, spike a fever, go septic, and in a matter of hours need emergency intervention.  If you don’t see that part of Keyan’s life, you only see a portion of the puzzle.  Reading about it is not the same as living it.  It is not a matter of confidence, but rather a lack of understanding what she has been through, what we have tried, and how she responds.  I guess I have vented long enough.  We were hoping to come home with a clearer picture of Keyan’s future.  While we didn’t quite get that, it is good to have a plan, new eyes, a team who specializes in her uniqueness, and a little bit of hope.  For today, I am sticking with that.  I am going to try and put aside my worries about the logistics and deal with them as they come.  For now, I am glad to have my family back together and look forward to the last weeks of summer.