It’s amazing that this incredible journey of life began 6 years ago…today. It’s been another interesting year filled with fear, exhaustion, and pain…but it has also been a year of life, blessing, and healing. We are so grateful for another memorable year with this incredibly special little boy. Thank you God, Family, Friends, Teachers, Pastors, Co-Workers, etc. We are looking forward to many many more. May the best days of our past, be the worst days of our future.
Discharged! 🙌
Happy Thanksgiving to us!
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.
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!
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
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
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
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
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
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.
#GoBeckett
#ODAAT
Heart of Beckett 