Heart of Beckett

UPDATE 3/13/16

Well, after two long nights of Beckett not wanting to sleep in a foreign bed, he is home and sleeping soundly in his crib. This weekend was definitely unexpected, especially since a little over a week ago Beckett had his quarterly cardiology appointment and his GI appointment last week, both of which went wonderfully. However, in the ER, one of the first things we tell patients is to follow up with a primary care provider, so, in an attempt to avoid looking like a hypocrite, I took Beckett to his doctor Friday morning. We were really just going to say “Hey, we were seen in the ER on Sunday, and he is doing much better”. Sadly once we got there, his oxygen saturation was a little too low for comfort so we earned ourselves an overnight observation stay in the Peds unit. It was only a few short hours before it was determined that Beckett would be better suited at Riley and we were on our way to Indy. To top it off, when Lifeline rolled in to Beckett’s room at Ball Memorial, he stood up and did a somersault in his crib. It was hilarious. He was probably the least sick “sick kid” they have ever transported. He loved the ambulance ride. My dad got him a toy ambulance when we arrived at Riley ER and all weekend Beckett played with it saying “I wanna ride it”.

Throughout the weekend they tried both on and off oxygen, neither of which showed a true difference, did a repeat Echo Saturday morning which still looked good, and he tested negative for the flu. It was determined he was taking longer to recover from the virus he had last week, which was continuing to affect his respiratory system. They suspect as he gets over it, his saturation will continue to increase to his normal. Since they were really just observing him, and not providing him with any kind of intervention we were allowed to go home and continue to monitor his vitals closely.

Through it all, Beckett was so well behaved. We watched lots of Mickey Mouse clubhouse, played cars on the floor, took wagon rides, and dirtied virtually every toy in the heart center playroom. It looked like a tornado had gone through, which gave Jonny, my mom, and myself the privilege of sanitizing practically everything in the room. Despite asking numerous times “Go home now?”, Beckett never really complained. He didn’t pull at the oxygen tubing taped to his face, or his IV or the monitors. In fact, when his pulse ox would fall off he would ask us to “Fick [fix] it”, put his thumb up in the air, and say “This one”. He was full of please and thank you, and was truly a little trooper. He would even say “I sorry” if he accidentally pulled on a cord or wire. None of it really seemed to faze him other than sleeping at night in a different bed.

This weekend could have definitely been much worse, and we are so glad to be home after just two short days. As I mentioned, we did have our cardiology appointment a week and a half ago, and the current plan, should Beckett’s oxygen recover to his norm, is to have an appointment in August, a heart cath shortly after, and surgery after that. Should his oxygen stay low on a more permanent basis most likely all of that will come sooner. Jonny and I cannot thank you all enough for all the love, support and prayers. It is overwhelming how many people are invested in Beckett’s life and continue to follow his journey three years later. For that we are truly grateful.