October 28, 2018

“No Problem!”

Thanks for all the prayers and encouragement everyone. We are finally home.

October 27, 2018

UPDATE (10/27/18)

What a smooth day? I arrived this morning to see Beckett sitting in bed with something missing from his nose. No more cannula!!! I could hardly believe it. Somehow they were able to wean him completely off his oxygen throughout the night. So, today was just filled with a lot of playing, walking around, and a few breathing treatments. Needless to say I can probably keep this post short. Though I always hate saying things like this beforehand….it looks like we might be coming home tomorrow! 🙌 Yay! Beckett, however, really wanted to come home today….and, I don’t think was fully understanding the concept of what we were saying when he repeated to us, “‘I’m coming home tomorrow’ right now!” lol No, no….but soon bud…soon.

We are hoping for a discharge around midday, if possible. We are obviously eager to get home and close this chapter. So close. Thank you God for your provision and healing.



October 26, 2018

UPDATE (10/26/18)

Today was a much better day (praise the Lord). We are certainly not the doctors, but I would say we agree and like their plan of action. In essence they want to wean Beckett off his oxygen support and make sure we have proper pain control. Yes, in short they want to clear up the pneumonia. I think we still have another few days in here…but we are hoping to be home by Sunday.

My mom was able to visit today and bring our youngest son, Milo. It was great to see him again…and equally as great when Beckett and Milo seemed excited to see each other. Now, more than ever, Beckett wants to go home…so, we have to try and navigate those conversations carefully.

We’ll just keep this post short. But we are truly grateful for Beckett’s progress. We are also thankful for a lot of “little things.” For example:

– Though we had much better plans in store for this week (as this week is Beckett’s Fall Break), but it’s nice that he isn’t missing school.

– In the same vein, Leah’s mom works in the same school district, so she’s been able to be around and very helpful this week.

– My Mom happened to already be in town this week (for the other fun plans we had), but she has been wonderful in helping us out and watching Milo these past few days.

– When we arrived back at Riley in the ER, Beckett’s actual cardiologist was “on” that evening (there are probably about 20 here), so it was nice to have someone present who knew Beckett so well.

– Even our friend who has done so many of Beckett’s echos was the one who walked into the room to do his echo in the ER. It was just very comforting to see her.

….so many things to be thankful for. We definitely have had some forward progress and are just trying to be patient with the process.

And as always, thanks for the support. The messages, likes, comments, texts, calls…are all very encouraging and kind. People keep asking how they can help. This is a challenging question to answer, and to be honest we’ve hardly taken anyone up on their offers. This doesn’t mean we don’t want or need help, we just don’t like to inconvenience anyone. We’re working on it, and appreciate the offers. Please be patient with us as we navigate that. And thank you for the many offers, perhaps one will land at the right time for us. For now, thanks for all the prayers and kind words for Beckett. It certainly puts life in perspective when you genuinely feel like you were just a few hours away from possibly losing a child. Oh, and thank you to our colleagues and my students….you have been so kind, encouraging and generous. We really appreciate it.



October 25, 2018

UPDATE (10/25/18)

Today was a good day. Stable. Uneventful. Good. Beckett had a rough start to the morning when he woke up about 6am crying out in pain. Crying quickly turns to coughing, to more crying, more coughing, can’t catch his breath, oxygen dropping, getting bluer, and round and round we go. The nurse and I were trying everything to calm him and while he would settle for a brief moment it was short lived before the cycle started again. He was asking for his dad so I called him to come over as he is staying across the street in the Ronald McDonald house. Unfortunately we were not able to get him calmed down after about 40 minutes so they decided to give him morphine to ease his distress. It was perfect. So I guess it was a little eventful first thing but nothing after that. Beckett spent the day watching movies and goofing around with family. He was able to sit in the chair most of the time he was awake and took a three hour nap. His appetite is slowly returning. We even played one of his favorite games, Bingo, which he won.

So what are they saying? Beckett’s respiratory distress is being cause by a pneumonia in his right lung. He is getting IV antibiotics, special breathing treatments and being encouraged to cough as much as he can. All the tests that have been done concerning his heart have shown no change from his previous appointments. Great news. Unfortunately it seems we may have hit the perfect storm as far as why he got so sick. He may have had something brewing prior to surgery on Tuesday that was exacerbated by being intubated for surgery, compounded by his post op pain and therefore not breathing deeply, along with pain medication that further decreases your respiratory drive. Over time it looks like this led to decreased oxygen until his body finally gave out. Possibly. They can’t say for sure why he was “passing out”/turning so blue, and we may never know. While a pneumonia like this would make any child ill, it’s possible due to Beckett’s abnormal cardiac anatomy he just couldn’t fight it.

So now it’s a waiting game. Waiting to see how long it takes to fight off the infection. Waiting to see how long it takes to decrease his oxygen demands. He is on a high flow oxygen that is giving him a lot of support. We can’t leave the ICU and move to step down until that significantly decreases. Waiting to make sure he continues getting better rather than worse. We will be here at least a few more days. But, we would rather stay here as long as it takes than not have our son. So, we wait. A game with which we are all too familiar.

We can not say enough thanks for all the words of encouragement, prayers, texts, calls and even visits. It means more than you will ever know.

October 24, 2018

UPDATE (10/24/18)

Well, I guess we spoke too soon. Here we are back again at Riley. In true Beckett style he decided to keep us on our toes again. Unfortunately Beckett began to slowly regress last night and certainly into the morning. I went into work a little late this morning but was hoping that with a little time and sleep (and some pain meds), he would be feeling better by this afternoon. However, that was unfortunately not the case.

I received a call from Leah early afternoon which started with, “I’m trying not to freak out, but…..” Which, you obviously never want to hear. I’ll admit that some old emotions definitely came rushing back. She went on to explain that she thinks she needs to call an ambulance…Beckett wasn’t looking good, at all. So, she called an ambulance and I left work. I got home right as the paramedics were taking him out of our house. I quickly ran up to him and saw a limp, cold, unresponsive, purple boy laying on a gurney. To be honest, it was terrifying…he looked dead. They decided they needed to take him straight to Riley, and Leah overheard the paramedic say that they are bringing a 5 year old boy who was apneic (meaning, not breathing). When they hooked him up to a pulse-ox he was satting 12……..12!! 😳 That’s about as close to dead as you can get. The paramedic said it was the worst he’s ever seen.

So here we are, in Riley’s ER waiting on the results of some tests. At one point they were very concerned that his fenestration was clotted (that’s not good) because we had to stop his blood thinners for the surgery yesterday. Turns out that not the case. They are now doing a number of other tests. It’s just so crazy that a simple surgery like yesterday can slingshot into all of this….but this is just too reminiscent of years past. Lots of drama in those early days. And to be honest, I don’t really miss it. 😉

We are feeling a little better now. We still don’t have any answers, but Beckett looks much better. Sooo, they are admitting him to the PICU and now we wait. I think everything is “okay”…so I guess stay tuned.



October 23, 2018

Playing #GoPup (#GoFish) to pass the time. Also, looks like we are getting discharged today. 🙌 Thank God for a smooth day and to everyone for the kind words and encouraging texts. #ODAAT

October 23, 2018

UPDATE (10/23/18)

For those of you still following along, we are at it again. We just checked in this morning at Riley Children’s Hospital for another minor surgery. This time it’s to surgically close up his g-tube site. You may recall back in July we were given permission to take his feeding tube (g-tube) out. Though often these sites close up on their own, Beckett’s g-tube might have been in for so long that the scaring won’t allow it to close up without an actual procedure.

So, here we are again waiting for the doctors to take our little bub back for another operation. On our drive down last night I looked over at Leah and said, “Sooo, this is it…right? No more after this.” In which she laughed and said, “Yeah, we keep saying that…” So, we think “this is it” for a while. We think. This is a significant last step to close the chapter….but really, is the chapter ever really closed? His journey is always on our mind because we live it every day. There were very dark days we never want to go through again, but we are still grateful for the journey. We’ve gotten to see our son be so brave, we’ve come to value his life more than we thought possible and love deeper than we knew we could love. I’d say that Beckett has even deepened our love for Milo. If you’ve gotten to know him and his heart (literally and figuratively), you’ve see just how big his 1/2 heart is. He’s such a kind, social and funny little boy. What a true blessing he is.

Sooo, in the midst of typing this they actually came back to take him in for the surgery. It’ll take about an hour and a half and it’ll be done. Thank you all who have followed us this far. It’s both encouraging and humbling.



September 30, 2018

Beckett loves his new glasses. Thank you Jonas Paul Eyewear!

❤️ 👓 #JonasPaulEyewear

August 13, 2018

UPDATE (8/13/18)

And just like that, Beckett started Kindergarten. I’m writing this post because of that, but also because we’ve been meaning to update you all about something for weeks now.

Other than Beckett’s last procedure he had this summer (the Cath), his final big step was/is removing something from him he has had since he was about 3 months old. Since Beckett missed the critical stage of learning how to eat, he needed to rely on food that would simply pump straight into his stomach. This was one of the many machines he had to carry around (probably the most predominant one). If you recall Beckett playing in public with a tiny little black backpack on, that was his g-tube pump. I remember very clearly being told in the hospital that getting to the point where he no longer needs that will take a long time and a lot of patience (and it sure has).

Well, a few weeks ago we received the “green light” to take it out….ourselves. We were told that it could close up within a few days, and, to be honest it began to look like it was. Unfortunately we are battling a little bit of consistent leakage. So, at some point we may have to take him in so they can close it completely. However, this post is supposed to be good news. Soooo, “It’s out!!!” That’s a big deal! His therapist (we drove to see in Fort Wayne weekly for years) did a fantastic job with him and certainly became a part of our family. Thank you, K!

With all that said, we are hoping and praying that it closes soon and that he does a great job “catching up” a little in Kindergarten this year. He’s a bright and curious boy, and we think he has another great teacher to help take him along his personal journey of learning.

As always, thanks for the consistent prayer and support. We still feel all the love.



July 28, 2018

Coming soon!