Category Archives: Jonny

January 14, 2019

This sweet boy has been dying to play in the snow. Today we snuck it in before mommy had to go to work. #happykid

November 25, 2018

UPDATE (11/25/18)

Sorry for the few-day-hiatus…we’ve just been acclimating to home life again. I’ll keep this brief:

We are doing well. Beckett is doing great. It took a few days at home on oxygen to finally see some significant steps of improvement. Last night was the first night I was able to successfully turn off his oxygen while Leah happened to be back at work (I’m sure it made her a little nervous). We tried a few other times and he “failed” (as in, a noticeable drop in his sats). But not only did he hold his numbers last night…they were impressive. It looks like he’s finally turning the corner. We even went to church today on no oxygen. I still brought the portable tank since he had only been off for about 12 hours at that point, but he hasn’t needed it yet. We’re going to send him back to school tomorrow (which he’s really excited about) and hope he adjusts well back into our old rhythm.

As always, we really appreciate the support and encouragement. Soooo many of you have offered words of encouragement, prayer, a helpful hand, and even finances. It’s all so very humbling, and we are so grateful. And we are continually grateful for God’s hand and provision over our son and family. To be honest, it’s been a long six years (almost six years). Sometimes it feels like when we have gotten past all the challenges, a new unforeseen (yet familiar) challenge rears it’s ugly head. But God’s faithfulness and this amazing community of friends and family have consistently surrounded us. As much as I genuinely wouldn’t wish these “challenges” on anyone…ever…the blessing of seeing the best of humanity and God’s love from this perspective is a beautiful and rare gift.

We hope you all had a lovely Thanksgiving. I know we have much to be thankful for and are truly excited to celebrate this next month together, at home, and as a family.

November 18, 2018

UPDATE (11/18/18)

This might not be the most “flattering” picture taken of our handsome little boy, but I had to post it because this is a picture of him during his nap today putting up some of the best numbers I’ve seen on him in days. It was encouraging. Unfortunately I think we may still have another day or two in the hospital, but I’m feeling optimistic that we should be getting discharged before Thanksgiving. Happy Thanksgiving to us!

We are so grateful for the progress (though slow-n-steady), friends and family, all the encouragement and support, and God’s healing hand.

#GoBeckett

#ODAAT

November 17, 2018

UPDATE (11/17/18)

Well, we feel like we are finally trying some things. Thankfully (out of 20 cardiologists, or so) Beckett’s actual cardiologist, Dr. Schamberger, is back on. Everyone else has done well, but it’s nice to have someone back that knows Beckett and his history so well. Soo…as tactfully as we could address it, we asked if we can finally “do something.” We just feel like we’ve been sitting here for days waiting for a cough to pass (which isn’t really all we’ve been doing…but it just feels like it sometimes). So, they are actually going to try a different antibiotic and possibly a breathing treatment they have been dragging their feet on. They are thinking it’s possible Beckett’s original pneumonia was actually atypical, so while the antibiotics improved his symptoms it didn’t fully go away which might be why he is still having trouble. We are hopeful and optimistic that this will help. We really want to go home, but at one point they casually said something like, “let’s try this antibiotic for a few days and see how he’s doing.” Ahhhh! 😔 Sooo, it still might be a few more days. We really do need to get back to work. I’m falling behind on my duties, and when Leah doesn’t work, she doesn’t make any money (being hourly and all). Sooo, we’re stuck between wanting to be here for him and needing to keep employed and have a paycheck coming in. But, this is life right now and when we are able to take a step back we have to remind ourselves how thankful we are that Beckett is still here and these challenges are all we are dealing with right now. For perspective, the other day we heard them call out on the overhead speakers an emergency ECMO call (which is where we use to be 6 years ago…it’s basically “life-support” or bypass). Our heart breaks for what those families are working through right now. Those were some very VERY scary and draining days for us. That is certainly not where we are at right now. So again, thankful (with perspective) for another day with our charming little boy.

So, thanks again everyone. Thanks for the prayers…and, we’ll keep taking things one-day-at-a-time. Oh, and if you want to “give” anything financially, our giving page is still up on the HeartOfBeckett website….but certainly don’t feel any obligation. The prayers and encouragement is great as well. Thank you everyone. Truly.

#GoBeckett

#ODAAT

November 16, 2018

UPDATE (11/16/18)

Still here. We made the tough decision to actually suggest staying another night because we have yet to stay the night without oxygen support (as much as we REALLY want to go home). We pulled him off oxygen again this morning, but unfortunately during his nap he began to desat (again, while off oxygen). So, the nurse had to come in and put his nasal cannula back in. We’ve tried some breathing treatment exercises since then that have seemed to help, and Leah thinks that some lasix will help him (he seems a little “fluid overloaded”). So, we’ll see if all that helps. For a moment it was looking like we were electively saying we want to go home tomorrow, but at this point I’m not 100% sure that’ll even happen. We’ll see if they agree with the lasix and if the breathing exercises work. If so, maybe…if not…we’ll see how much longer it’ll be. Time will tell.

#GoBeckett

#ODAAT

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.

#GoBeckett

#ODAAT

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.

#GoBeckett

#ODAAT