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 22, 2018

Happy Thanksgiving from our entire family! We have a lot to be thankful for this year.

November 21, 2018

Discharged! 🙌

Happy Thanksgiving to us!

November 20, 2018

UPDATE 11/20/18

Today was similar to yesterday. Beckett was doing pretty good first thing in the morning and then during breakfast his heart rate shot up again for no apparent reason. As the day wore on his oxygen saturation began to get lower and lower until he was finally increased on his oxygen higher than he has since we’ve been here. So here comes the good news. This evening he has looked the best I’ve seen yet. Goofing around with his dad, laughing and just overall having a good time. He’s gotten videos from school, church and cousins, as well as fun surprises from friends too! We can not express enough how much these mean to him. They make his day and his whole face lights up. His breathing has been very relaxed, and they have been lowering his oxygen back down. They also did an echo and some blood work this afternoon to rule out his heart as a problem and it came back completely normal. Praise the Lord! Here is even better news. As of rounds this morning, we are heading home tomorrow. Now, he does have to go home on oxygen, but at least he gets to come home. They believe that as this virus continues to work out of his system he will work his way off the oxygen. We are hoping that happens by the time he is supposed to go back to school on Monday. It’s going to be a great thanksgiving at home, full of rest, family and our many blessings.

November 19, 2018

UPDATE 11/19/18

Today was an interesting day. Beckett had a pretty good night, but unfortunately his oxygen didn’t get weaned at all. Then this morning his heart rate was fairly elevated until the early afternoon and his oxygen saturation was lower than it has been. His cardiologist tried taking the oxygen off all together to see how he would do and that sadly lasted a very short period of time. So he’s still where he has been for days. They added a new breathing treatment today that has a special piece that makes his lungs vibrate as he breathes in the medicine. He didn’t like it the first time, but he was doing really well with it this evening. However, it made him cough, a lot, which is what it is supposed to do, but he coughed so much it made him vomit and they had to be done before the medicine was finished. He will get it three times a day so hopefully tomorrow goes a little better.

I was feeling pretty discouraged today as it seemed Beckett was actually getting worse and not better. So, I spoke with the resident for a long period of time and was able to get all my concerns off my chest. She took them back to the team for discussion. They did do another chest X-ray which looks better than the one from Friday, so that’s good news. She came in later to discuss things with me and my mom and I both specifically asked if they were at all concerned his heart could be playing a part in this. They are not, thank heavens. They continue to encourage us that this appears to be a very nasty virus, plus partially still recovering from the previous pneumonia, and it has just really knocked Beckett down. She said this kind of thing could really take a toll on a normal kid and Beckett is already high risk. They are even talking about sending him home on oxygen that we could wean as he continues to recover should they not be able to do that here quite yet. They don’t want to keep us in the hospital just for a little bit if oxygen. So, tomorrow is a really big day. We need to see some good improvement throughout tonight and tomorrow. If he can do that we might be able to come home Wednesday. We are hoping to spend the holiday with family, but we don’t want to take Beckett home and end up right back here again. Only time will tell.

Beckett was able to play tonight with my mom and sister and he even had school today with one of the Riley teachers. That helps break up the long days and keeps him learning while he’s here. He truly misses his friends and teacher and asks often when he can go back. They sent him the sweetest get well video today and his face completely lit up at seeing them. Thank you to all who have shared encouragement and support. It definitely helps us get through the days.

Daddy went home today to work and stay with Milo. Sweet Milo seems a little confused by all this as we have hardly been able to see him. We FaceTime every day but it’s just not the same. I was able to see him yesterday for a couple hours as I snuck away to my sister’s baby shower, and now Jonny is home with him. The sweet thing just clings to us like a monkey and yesterday he kept grabbing my face and giving me kisses. We can’t wait to all be back together. Maybe it will be over a nice turkey dinner!

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