Thursday, September 1, 2011

Back in Beantown

Well, we made it back to Boston.  It was a very long day preceded by a very long night.  Keegan's fever returned Tuesday morning, and it really hit him hard overnight.  He could not get comfortable, even with IV tylenol, and was awake from 1:30am on.  Yes, on.  Gray and I didn't finish packing and getting things situated at the house until almost that time, and then, I would have had a little over two hours of sleep before needing to get up to make my flight.  But those two hours were spent trying to help Keegan fall asleep.  I just barely made it to the airport, and an angel must have been on baggage duty, as that's the only possible explanation as to how all of our bags also made the flight!

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.  

Well-loved Mrs. Mallard with her ducklings,
Jack, Kack, Lack, Mack, Nack, Ouack, Pack, and Quack

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.

Waiting in the Solid Organ Transplant office at CMC at home for the transport team to pick him up.

They took the exact same plane they took 2 years ago.
Looking at that tiny thing (rather than the larger CMC jet), I am thrilled with my choice to let Gray go with Keegan and fly on Southwest myself!

Loading up

Feeling yucky but always a trooper

Part of the crew

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.

Safe and sound in Boston

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.  

"For I know the plans I have for you," declares the Lord,
"plans to prosper you and not to harm you,
to give you hope and a future."
Jeremiah 29:11


8 comments:

Andrea Riojas said...

Praying for answers in Boston! So glad to get the update. Stay strong, you are doing a great thing for Keegan.

Julie said...

So glad to hear you all arrived safely in Boston. Praying for all those who will be involved in Keegan's care and may they have a plan put together quickly. Praying without ceasing. You are never alone.

Becky Cudlipp said...

Thinking about and praying for you all. Saw your Mom outside holding Audrey today. I agree with you on the plane; you'd have to sedate me to get me on that thing!

Linda McElreath said...

Praying for all of you to have that peace that passes understanding and for answers that will give you hope and encouragement for the future.

Aunt Alex said...

Give big Bug a hug from me! I miss y'all and can't wait to see the progress Keegan makes over the next few weeks and months. Lots of hope from home!

Kathleen said...

Found your blog link recently on a Dallas Children's page. My 8-yr-old son Anthony receives his cardiac care there as well. I am not "caught up" on Keegan's full story, but I know enough to know you have been traveling a tough road. Please know you and your family will be in my prayers. God is faithful.

Jessica said...

Maddie,

FIrst off, thank you for sending a gift card through Chelle Cates. I've been reading your blog for awhile, and in many ways the unknowns you are facing seem very familiar to our journey with our daughter.

We will be at CHB on the 8th (thurs) for most of the day... would you like a visit? Can we bring you anything? Let me know :)

Ashley & Chuck said...

So glad that you all made it safely. I'm praying that you all get some much needed answers in Boston. Give your Bug a big hug for me!