Back in Beantown

My flight left at 6:30am with a brief stop in St. Louis.  I landed in Boston right at noon.  Only to find out that Keegan’s fever made the transport team have to take a few extra precautions, and as I was arriving, they were just leaving Dallas…two and a half hours behind schedule.  Their projected arrival time was 7pm, which meant Keegan hadn’t been assigned a room at the hospital in Boston yet and left me nowhere to go for the next six hours.  Luckily, some lovely staff members on the cardiac floor at Children’s agreed to lock our bags in an office while I waited.  Being that it was a gorgeous 80 degree day outside, I took advantage of the almost thirty degree difference between here and home and just set out walking.  I made it all the way to the Public Garden (probably a good two and a half miles), where I spent time with the Make Way for Ducklings statue, Keegan’s very favorite spot in all of Boston.  It was difficult to sit there alone and watch other families playing and laughing with each other.  But it also reminded me of why we are here – in hopes that once again we will be one of those families too.  

Keegan had a pretty difficult time on the first leg of his flight from home to Lexington, Kentucky.  He got sick to his stomach right before they landed.  It must have lifted some of his discomfort, and he was finally able to sleep for a few hours on the second half of the flight.  When they left Lexington, Keegan wasn’t looking very good, and the transport team was concerned they would need to stop in the ER on the way in.  Luckily, he perked up enough to avoid that.  He and Gray arrived here with the medical air transport team around 7pm and were taken by ambulance to Children’s Hospital.  This fever is mimicking last week and is heading into day 4.  At least the team here is getting to see how these cycles go.  He was quite uncomfortable last night and threw up this morning again when his temp spiked up high.  We’ve only given one dose of the IV tylenol though because the team wants to see what he will do without it.  Does it go on longer than 4 days?  Do the peaks get higher?  So far, he’s looked pretty much the same.  We will just have to wait and watch.  We convinced him to go outside for a brief bit this afternoon, but he doesn’t have much energy still.

Today was another very busy day, trying to meet with doctors and fellows and residents.  They are trying to get a good picture of Keegan’s history and sort through all the records that came with us.  He had an echo, EKG, and xray today.  Our transplant cardiologist here, Dr. Blume, is not on service technically, but she is still leading the show.  We learned some wonderful news today that our gastroenterologist, Dr. Kamin, is actually going to stay on Keegan’s case, even though he now heads the ethics board for the hospital rather than see patients clinically.  We can’t wait to see him tomorrow, and hear what he has to offer.  It will likely be a few days (which unfortunately includes a holiday weekend) before we see a “grand plan” start to come together.  We anticipate visits from immunology, infectious disease, hematology, and possibly nephrology and genetics over the next week, too.

We are extremely grateful for the prayers and well wishes that were sent our way yesterday.  Every one was felt in earnest, and you truly helped ease our minds and hearts as we traveled separately, yet surrounded by love and support.  It humbles us daily to know there are so many friends and strangers pulling for our Bug.  Thank you for continuing with us on this journey.  We have gotten weary at many points along the way, and it would have been just as easy for many to walk away, rather than trudge along with us daily. You help us carry on every day, especially the days when we could not imagine continuing alone.  We are anxious to see the plan the Lord has for Keegan and our family on this new part of our journey.  Thank you for traveling it with us.