Cincinnati....why we go

This past week, Paul, Keyan, and  I traveled once again to Cincinnati for check-up appointments with Keyan's GI doctor.  Right now we are on an every three to four month visit schedule and it is amazing how fast that times goes!  For some reason, getting ready for this particular trip was a little more stressful than normal.  Several times during the week before, Paul would just look at me, shake his head, and say, "It is alright, I know you just get on edge before these trips."  And that was very true this time.  I am not sure if it was the couple of sick kids we were leaving behind, the debacle we had trying to rent a car, the fact that I was missing some of Spring Break, if it was me not feeling well, or if it was just the truth that sometimes this life gets to you.  Regardless of the reasons, there were several times that I wanted to just call the trip off.  However, we someone got all of our ducks in a row, and left Wednesday afternoon for our Thursday appointment. 

Keyan is such a great traveler.  As long as she has a movie playing and you stop frequently to use the potty, she is one happy girl.  She looks forward to seeing our family down in Cinci, especially their dog!  Our time away consists of an entire day of travel, most of the next day at the Children's Hospital, and than another entire day of travel so it is a quick and busy trip but Keyan never seems to mind.

On Thursday, I woke up feeling very sick and my face was very swollen.  Knowing the importance of the trip, I knew there was no time for feeling yucky, so I gathered my strength and we headed to the hospital.  I was sure not to touch anyone and used all of the germ protecting skills I knew. I had a lot of guilt about being there, but didn't see a whole lot of options.  We saw the doctor and his team and were able to discuss so many aspects of Keyan's health.  The doctor had some thoughts on her latest vision issues and threw out the idea of an MRI to be sure there have not been changes in her brain.  We will take that idea and tuck into our back pocket, discussing it further with some other specialists.  We discussed my belief that the vision changes may be a piece of the unknown puzzle of Keyan's underlying health issues and the team confirmed that that was not a far fetched notion.

Interestingly enough, when they were getting her vitals, they mentioned that according to the last height in January, she had shrunk.  Now, normally that would be written off as human error or some strange miscalculation but two weeks prior, Keyan had seen the developmental pediatrician where they too had commented that Keyan had shrunk.  One time is strange, but having been told twice that Keyan had shrunk was now quite alarming.  However, once again, we were in the great hands of experienced doctors where they were alarmed but not panicked and were able to give us some very logical explanations of why this may be occurring which gave us a peace to wrap around us. 

We than discussed her last few months of labs and they let us know their concern that she was running on the side of dehydration. Seeing Keyan in person, they were able to confirm the trends of the labs and again because they are experienced enough in all of this stuff, they knew how to get ahead of the problem.  In the end, they made the necessary changes to keep her hydrated without adding calories and give us a little more margin of error as the weather warms and summer approaches.

Here we were, all crammed into a little exam room, me coughing my lungs out with my eyes almost swollen shut, Paul trying to speak on our behalf answering and asking questions, Keyan justifiable a  tad irritated because her ipad battery is dead, and the doctor still takes the time to share with us his experience with labradoodles and why they make great service dogs!  It was quite the visit.

This is why we go....more than likely, going to Cincinnati will never bring that "a-ha" moment that we so desperately desire.  But it is no longer about that.  Cincinnati makes changes and tweaks things so that Keyan can continue this life.  This life outside of the hospital.  Had they not made the changes in her TPN this time, a few weeks from now, we would have found ourselves in a hydration crisis which could cause harm to Keyan's heart, kidneys, and liver.  Not only does there changes help head off a crisis but it also protects her organs which are in enough of harms way to begin with.  It was made so clear to Paul and I that no matter the stress to get her there, Cincinnati is more than worth it. It keeps Keyan with us and at home....loving and living this life.  We go because we have no choice.  We go because every moment in Cincinnati Children's medical center gives us more quality to Keyan's life.  We go because we have found a team of doctors that respect us and the history we have with Keyan, who care about all aspects of her life, and who will not stop trying to give is that "a-ha" moments we seek.