We arrived in Orlando around 3pm for Keegan's Make-A-Wish trip to Disney. After getting the car and bags and all, we got to the Give Kids the World Village where we were to stay around 5:30pm. Then the whirlwind of checking in, getting the lay of the land, unpacking, giving meds, etc, started. We were told to grab dinner quickly because Thursday nights are "Winter Wonderland" and to not miss a meeting with Santa (more details on that in another post). In the middle of that, I had to attend an orientation meeting for parents to get all our park passes and details of the trip. We finally got the kids to bed and made a plan of action for the trip with our family by 11pm. Pulled meds and prepared for the next day, then headed to bed around midnight.
Keegan was sleeping in one room with Alex, and Audrey was in a crib in a room with me and Gray. I hear Keegan start moaning and crying around 12:30pm. At first, he didn't feel that hot, but I realized he had the chills when I laid down next to him. I tried to convince myself not to get up and dig out a thermometer, but after 15 more minutes, I could feel him starting to sweat. Temp was 101.7. Woke up Gray, sent him to Walmart for tylenol. By the time he got back (maybe 20 minutes), Keegan's temp was to 103.6. Called the transplant team, hoping we could wait until morning before bringing him in. Nope, they said find the local children's hospital and take him right now. Alex stayed with Audrey, and less than 12 hours after we landed in Orlando, we were checking in at the ER at Arnold Palmer Children's Hospital.
A little Curious George always helps ER trips be more manageable.
Both the team here in Dallas and the doctors in Orlando acted quickly. A preliminary set of labs indicated Keegan was surely having another MAS flare, so we started a steroid pulse immediately. Line cultures were drawn to be sure, and we just tried to manage his fever in the ER. We tossed around some ideas about what to do, but ultimately, we knew the safest thing to do was to bring him home. He wouldn't feel better enough in time to use our park passes, and we didn't need to take a spot at Give Kids the World from another family. Additionally, APCH does not have a transplant center or a rheumatologist on staff, so his treatment would be the doctors implementing whatever our team at home said to do anyway. By 10am, they were working on insurance approval for the transport home.
Loading into the ambulance to leave APCH for the airport.
About 30 minutes before the flight team showed up at 11:30pm, one of the line cultures grew back positive. We started antibiotics even though we were all fairly confident it was a contaminate. Keegan seemed to relax when the transport team arrived. It was two nurses he knows well - one of them, Jayme, was even there the day he was born and took him from Plano Presby to Children's. I'm sure the IV benadryl we gave before leaving didn't hurt either! The flight went smoothly overall. We stopped in Jackson, Mississippi briefly to refuel and landed in Dallas sometime around 4am. Keegan slept almost all the way, and never required any interventions while in the air. He seemed happy to be on "number 8" with his friends, and I know I was happy to see some familiar faces as well.
Medical flight #3 for Buggy
Home sweet home
As I said, things were starting to look better today. We're doing a 5-day pulse this time. They redrew a line culture yesterday, and it hasn't grown anything. We will finish the run of antibiotics tomorrow. If things stay stable, we will go home tomorrow afternoon. It seems pretty well decided what the next drug choice will be. Nothing we do from here on out will be easy or risk-free. We're talking heavy hitters now. Before we do that though, we are going to have another team meeting with his main rheumatologist (not one of her attendings) and immunologist present. Both women are extremely smart and are really working hard to figure Keegan out. They originally wanted to wait on changing his treatment plan until we had the last blood work finished, but obviously, we won't have that luxury. These labs are looking for an inflammatory pathway where Keegan's normal immune system breaks down and for a battery of other genetic immunodeficiencies that hold some promise for an answer. However, if any of them are there, it will put Keegan back on the bone marrow transplant track.
A visit from Audrey, BD, and Mickey Mouse never hurts.
I am still downloading and editing the few pictures we have from the trip. Because we didn't use our park passes, Give Kids the World said we could definitely come back. Make-A-Wish has already said they are ready to work with us again as soon as Keegan is ready. If there is a silver lining in all this, it is that Keegan has absolutely no idea what he just missed. He can only comprehend what is going on right now and about 10 minutes into the future (hence Gray's famous phrase most often said to the grandparents, "don't promise or mention anything to him that you can't produce right now!"). Luckily, that means that unlike other kids his age who may have been looking forward to this trip for months, he is blissfully unaware. Audrey still mentions Minnie and "the castle" now and then, but she seems happy enough about it. The Give Kids the World Village is like a little theme park in and of itself, so the family had no problem whatsoever keeping her entertained Friday while we waited at the hospital with Keegan for transport.
I know I say it alot, but thank you so much for your prayers and support. We are beyond disappointed and frustrated. Such an enormous hit to our strength and hope for better times for our Bug. I pray that it makes our return trip that much sweeter though.