November 15, 2018

UPDATE (11/15/18)

Beckett is doing okay…that’s the perspective we are trying to hold onto. At least things aren’t “life-threatening” right now. As many of you know, Beckett is a sweetheart…but today he was extra ornery (and not in the endearing kind of way). Perhaps it’s our lack of patience with this process…but today just seemed extra long and extra tiring. However, I will say the evening ended very cute. I drug Leah out of the room after we put Beckett down (she doesn’t leave often) and we shared some ice cream together. She said, “I should get back to him…he’s probably waiting for me.” Admittedly, she was kind of being facetious…however, she later texted me this:

Beckett’s awake. He said “mommy you’re back. I stayed up all night waiting in case you needed me”

…and in one swoop he nearly redeems the entire day.

From a clinical standpoint, Beckett is doing okay (as mentioned). The test they did last night (and then later I learned they had to redo it again around 3:00am) showed that his liver, gall bladder and pancreas look fine. This is good to hear, but still discouraging because we still don’t have any answers. We actually tried proving that Beckett didn’t need the oxygen support this morning, but unfortunately he failed that test. Within a few minutes his oxygen saturation levels dropped 10 points and his heart rate began to rise. So, they had to put it back on. That’s disappointing. Everyone wants to go home. We’re over this. But Beckett still has a cough and still needs oxygen. He hasn’t had another “gut-wrenching episode” for over 48 hours (which is why we admitted him in the first place), but now we have this oxygen dependency out of nowhere. So we wait, and wait, and wait. I’d like to say we might go home tomorrow, but honestly it doesn’t really even look like that may happen.

We appreciate the prayers, support, visits, food…you all have been great. Thank you so much. We’ll make it through…one-day-at-a-time.



November 14, 2018

UPDATE (11/14/18)

Not much to report on. We are out of isolation (no more gowns, gloves or masks), so that’s good. We also haven’t had any painful episodes since yesterday. Beckett (and Mommy) got some decent rest last night too.

The unfortunate/frustrating thing is that we had to withhold Beckett from dinner because we were told they wanted to do one more test/scan on him (for his liver, gall bladder and pancreas). However, it is 10:00pm now and we still haven’t gone down. So, we are hungry (perhaps hangry), tired…and as a result Beckett has lowered his sats a little in which they have now increased his oxygen support (which is not the right direction if you are hoping to go home soon). Sooo…hopefully we’ll go down for the scan soon…get good results…eat some LATE dinner…and get some sleep. I think we just need to be done with the day, and maybe…just maybe we can go home tomorrow. We’ll see.



November 13, 2018

UPDATE (11/13/18)

Well, as many of you saw us post last night (or I guess early this morning), we are at it again. In every true sense this really is starting to feel like the earlier days (nearly six years ago). To be honest, I don’t really know what to say. Yes, we had that “issue” a few weeks ago and have largely been okay since then. I will add that Beckett has never really fully gotten over a cough he’s had since the time of that surgery. In short, he’s woken up the past four nights in a row crying and whimpering in pain…but last night was even worse. He was very blue, satting 40 (that’s really bad), breathing heavily, heart rate elevated, and clutching his stomach in pain. Obviously we are immediately concerned about his heart, but thankfully his heart seems okay. We asked him about his head, his throat, his chest, his breathing…but the only thing he has said is that his stomach hurts. However, he winces in pain so badly from it (and out of nowhere too) that it spikes his heart rate and his oxygen saturations plummet. It’s not fun to be around. To be honest, it’s a little scary. So we brought him in to Ball Memorial Hospital’s ER. They were in for a treat. It’s not everyday they see a 5-yr-old satting 60 or below and the parents seem okay with it. It was endearing (in the most respectful way) how concerned everyone there was. It truly felt like they cared, but it didn’t take long until they referred us to Riley. So, after being up for an entire day and my wife on the clock that evening (last night) we made our way down to Riley…again. I drove back home to Upland to pack up some things and sleep for a few hours. But, we’re back. And perhaps most discouraging is nobody seems to know what to do. They even “quarantined” us (hence the garb, gloves and mask) because they don’t know what Beckett has. And he doesn’t like it. lol He keeps asking us to take it off.

Sooo….here we are. This is everything I know. I guess tomorrow is a new day and we are just praying for answers. Thanks again (as always) for all the encouragement (“likes,” messages, texts, calls, etc). We really do have such an amazing support network. We appreciate you all very much.



November 13, 2018

Whelp, we’re back again. Unfortunately we had to make the tough call last night around 2:00am to take Beckett to the ER. He’s “okay,” but they want to send him down to Riley now for further examination (we are at Ball in Muncie). I’ve been up for over 24 hours and Leah worked last night. We’ll keep you posted as we learn more. Prayers appreciated.

November 10, 2018

A few weeks ago we were planning a trip to my home in Ohio. Beckett was going to get to ride in the combine and we were just going to enjoy some time with my parents. Unfortunately those plans were changed when we made the unforeseen trip to the hospital. A few weeks later we were able to make good on those plans…and even on my dad’s birthday. Today, I’m thankful for life, health, family and my heritage. Grateful for another day.

(and thank you cousin JJ for letting us commandeer the combine)

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.