Category Archives: Leah

January 14, 2020

Tonight we are sleeping in our own beds. Today Beckett was much more himself and was moving around without pain. He only had mild pain when coughing. A sweet friend and former coworker brought breakfast and then stayed for hours while Beckett did homework, played numerous games of bingo with us, in which she perpetually lost, sorry Kelsey, and then even took him to the playroom. Such a fun morning into the afternoon and Beckett begged for her to come home with us. Before we agreed to being discharged, we did ask for a chest X-ray since Beckett has had a bad wet cough, which they obliged. It said a possible developing pneumonia but when cardiology looked at it they said it was nothing they think needed treatment. So, Beckett’s official discharge diagnosis was viral syndrome. So simple. So common. It is an abrupt and painful reminder that Beckett, a kid with congenital heart disease, truly is medically fragile and the smallest thing can turn his health upside down. We continue to thank God that he has brought Beckett through each and every health challenge, and with each time in the hospital we are acutely aware that there will probably be more down the road. But tonight we will relish in the fact that we are back under one roof. The brothers could not have been more excited as they were literally sitting on top of each other on the couch, leaning their heads on each other, saying they missed each other, and then Milo leaned in and unprompted, asked Beckett if his belly was feeling better. The precious boys! Thanks all for following Beckett’s journey and for continuing to support us as a family. And a special thanks to Mrs. Holder and her class who left a package full of get well letters on our porch today. We appreciate each and every one of you, and could not survive these days without you!

January 13, 2020

Update on today. While the CT scan was read as a bowel obstruction by two different radiologists, they are saying they don’t actually think Beckett has one since clinically he isn’t showing the normal symptoms. The scan did show some bladder wall thickening so we have sent multiple urine samples and I’m still waiting to hear if he has a UTI, which they said would be uncommon. He did appear a little dehydrated so he’s been getting fluids and tonight he finally ate some food around 8 and drank a large amount of water. That was a huge plus. He spent some time with dad today while I snuck in about two hours of sleep and then he slept most of the afternoon and evening. He still seems to have quite a bit of pain when he is up and moving and especially coughing, which he has a nasty one right now, but the pain seems controlled with regular doses of ibuprofen. We did spend a little bit of time doing some homework papers (thank you Mrs. Holder for sending them) which I think has helped ease his anxiety about missing school and tomorrow the Riley teacher is supposed to come work on some more. So, at the end of the day we didn’t really get any answers. We will see what tomorrow brings. Thanks for all the support!

January 13, 2020

Well this morning we find ourselves once again at Riley. Beckett did not have appendicitis, but rather a partial small bowel obstruction which is causing him a good deal of discomfort at times. Thankfully right now he is sleeping and we are praying that with bowel rest we can avoid more invasive interventions. His biggest concern, and what has upset him the most (in his words), “But I have to go to school”. Thanks for all the prayers and support. Hopefully we can get this boy back to school in no time!

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!

October 28, 2018

“No Problem!”

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

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 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

July 8, 2017

Roastin 🔥

May 14, 2017

Happy Mothers Day to this amazing mother. You make these boys feel so loved and safe. We’re so thankful for you!