Heart of Beckett

UPDATE (10/7/16)
He’s out! Still intubated…but out! The surgeon literally knocked-on-wood and said, “It was smooth sailing.” He said it went really well and he is very pleased. As soon as he left the room Leah and I hugged for a while with tears of joy running down our face. With that said, we aren’t out of the woods just yet, as I’m sure recovery won’t be a breeze.
We will keep you all posted throughout the next few days/weeks. I’m sure these next few days are a bit more sensitive, but we’ll just take it in strides…one-day-at-a-time.
#GoBeckett

#ODAAT

UPDATE (10/6/16)
Patience: The capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.
I’m not sure how many of you saw my posts from yesterday, but unfortunately Beckett’s surgery was postponed until further notice. Thankfully, as we were pulling in our driveway at home we received a call which rescheduled Beckett’s surgery for today (10/6/16) at noon. Understandably the only question I kept asking all morning was if they were certain it would still happen today. With as much certainty a hospital can provide we were assured we were still on track. However, at one moment this morning I happened to look up at our surgeon’s PA making a face :-\ at her phone. She slowly looked up and said, “I’m so sorry, but we need to delay again.” Obviously we were a bit shocked, but one of the emergencies from yesterday is still having troubles today. It’s natural to get discouraged, but we are actively trying to hold to the perspective that another family is hurting much worse then we are. Soo….again, this seems to be the pace of Beckett’s journey, so perhaps it would be more alarming if it’s been smooth sailing….but perspective is always the lifesaver that keeps us afloat.
Sooo….here we go again. We have been offered the option of being admitted or going home and coming back at 7:30am tomorrow morning (surgery is suppose to begin at 9:00am). We’ll keep you posted…if you all are still reading by then. 😏 
#GoBeckett

#ODAAT

UPDATE (10/5/16)
MAJOR UPDATE 2:

I don’t know if you all saw my first “MAJOR UPDATE” post from earlier this morning…but the “madness” continues. Beckett’s surgery was cancelled today to be rescheduled at a later date because 2 critical patients needed our surgeon’s attention more than Beckett. As Leah and I have had a few minutes to reflect, we were happy to step aside as those “critical patients” use to be Beckett. We were the ones sliding in on others, I’m sure….probably numerous times. We have a lot to be thankful for 3.5 years later, and as much as this was an inconvenience on many accounts, it’s trivial with proper perspective.
Anyway…we live about an hour and 20 minutes from Riley Children’s Hospital….literally while we were pulling into our driveway the hospital called and wanted to know if we’ve left Indy yet. They looked at Dr. Brown’s schedule for next week and he is extremely booked, so, they were wondering if we could come back down tomorrow (10/6/16) to do the surgery at noon. Of course we said yes, but as you can imagine we are a bit (e)motion-sick from this week/today. Unfortunately tomorrow isn’t necessarily a guarantee as they used the words “we’re going to try to squeeze him in a noon.” Soooo….I guess we’ll just keep you all posted. Sorry for the roller coaster, but if you are new to the “Beckett-Ride” you unfortunately begin to get use to it after a while. Thanks for hanging in there with us.
One-Day-At-A-Time
#GoBeckett

#ODAAT

UPDATE (10/5/16)
MAJOR UPDATE:

In short, they just informed us that they have to cancel Beckett’s surgery today and reschedule it. They had two emergency surgeries come in this morning that bumped Beckett back. Being that Beckett’s surgery is more “elective” (not critical), he gets bumped in situations like this. Dr. Brown (his surgeon) delivered the news to us himself and was extremely apologetic. Though he couldn’t be specific, he is hopeful that this will be rescheduled in days or weeks (not months).
So, I guess…..stay tuned. The roller-coaster of emotions continues. We told our surgeon’s assistant that we are disappointed, but definitely understand. This is the same level of care we would receive from Dr. Brown if Beckett was in critical care. So, hang in there with us. One-day-at-a-time.
#GoBeckett

#ODAAT

UPDATE (10/3/16)
As I try to gather my thoughts heading into this week I am understandably filled with many different emotions. As I’ve said to many of our friends, we are trying to remain in the moment and be content for what we have today, but we are equally anxious and longing to have this surgery (this chapter) behind us.
Many of you know that Beckett’s last open-heart surgery is on Wednesday (10/5/16) this week. We will be going in tomorrow (10/4/15) for a bunch of pre-op stuff and are technically scheduled for surgery at 9:00am. As we’ve learned, these times are what they shoot for, but there is always room for delay. We will do our best to post updates throughout the day on Wednesday for those of you who would like to follow the progress. We are being told that the recovery is 7-10 days in the hospital, sooo….we’ll see how long he really takes. He’s a completely different boy this time around. He’s strong, brave and full of energy. We fully anticipate a smooth ride, but it isn’t difficult for our history/experience to creep in and plant unhealthy thoughts. Please pray for a smooth operation, peace, strength, patience, etc. Really, Galatians 5:22-23 would be great! 😏 
People have asked how they can help. To be honest, we’ve struggled with a response. There will be a lot of extra driving (gas) involved again, eating out (fortunate for my taste buds, unfortunate for my belly 😏), and significant loss of income from Leah not working…but, this doesn’t provide you all with a clear way to help. Your encouragement, prayer, and support is of most value to us, but if you’d like to be engaged in a more tangible way feel free to try and decipher our “concerns” above. I’m not asking for your money, but we do still have that option on this website. All of that money goes to his continual care and development.
Lastly, we still read every comment, and have been since we started this journey. Thank you all for your continued care and support. We have felt it and are extremely grateful. The new friends we’ve met through this journey, the old friendships rekindled, and even those of you we’ve never met…..thank you. I cannot wait for the day when Beckett will better understand the thousands of people who have cheered him on and cared deeply for his life and health. I am often overwhelmed by the support when I stop to think about it…so, again, thank you! We are almost there!
May the best days of our past, be the worst days of our future.
#GoBeckett

#ODAAT

UPDATE (9/5/16)
A quick, but important update:
It feels like forever since we’ve posted one of these, and it’s probably because it has been forever…but I’ll try to keep this brief:
As many of you know/remember, to fully address Beckett’s heart condition, the doctors suggest a three part process. Though Beckett has had numerous surgeries, he has yet to actually have the third/final one. A lot of steam has picked up lately on this timeline as we have just found out late last week a few critical dates regarding the final conclusion of this chapter in our lives. Beckett is scheduled for another cardiac cath tomorrow (9/6/16), Leah’s birthday (not the greatest of birthday gifts :-\). If this goes smoothly, which we fully anticipate, we actually have an official date of his last surgery….October 5th. As I’ve said to a few of my friends and family, “This just got real.” To be honest, the rush of emotion from years past has already reared its ugly head a few times for me within the last few days. We genuinely are not looking forward to this, but are anxious to close this chapter. I assure you we, as a family, have been embracing every moment since the day Beckett came home from eight months in the hospital on August 26, 2013. It’s been a wonderful few years together, and we are looking forward to many more!
So, if you would, please join us in your prayers and encouragement this next month (specifically 9/6/16 & 10/5/16)…we’d greatly appreciate it.
#GoBeckett

#ODAAT