Well, it has been a while, almost a whole year. To put it simply, Beckett has been thriving. We have been just moving through life, which is a wonderful blessing.
This past year we have enjoyed so much fun. Beckett joined the middle school golf team and did really well for his first year and golfing a full 9 holes. It was such a joy to watch him walking the course with his dad and grandpa giving him advice and encouragement. He also takes private lessons to improve his skills. We have been on vacation to Michigan, twice, he went to Miracle Camp, golf camp, the zoo, Peyton Manning Children’s Hospital Homecoming at the Colt’s stadium, the pumpkin patch, Fall Break in Archbold complete with a combine ride, and more. We have made so many family memories. We also welcomed two cousins to the family this year and I cannot explain how much Beckett loves a baby. It is truly the sweetest thing.
Beckett continues to do well from a medical standpoint. He started seeing a behavior therapist this summer to help with some of the issues he struggles with neurologically. She comes to the house and he is always excited to see her. He continues to see a counselor and he loves the one on one time playing and talking with her.
Friday he had an appointment with the Riley Fontan clinic. He goes to this clinic once about every 5 years and has a full day of testing and meeting with multiple specialties. His day began with an echo, with our favorite technician, Nancy. She has been doing them since he first went to Riley. So many people saw him and commented on how they can’t believe how big/old he has gotten. Trust me, we can’t either! He then had a pulmonary function test done. It showed some pulmonary resistance/scarring on the lungs but that is to be expected with kids who have had a Fontan. He went from that to a stress test where they put him on a lot of different monitors and had him walk on a treadmill at increasing speed and incline. He did extremely well on this for his age and condition so they were pleased. We saw a dietician who recommended a few minor changes, but overall his labs looked great. We also saw a psychologist and social worker. He finished the day with a Fibro scan to look at his liver because of the change in anatomy following a Fontan surgery. The rerouting of blood flow puts increased pressure on the liver and these kids are prone to multiple different liver diseases. We won’t get those results for a couple weeks. We continue to be grateful for good health and for a comprehensive medical team making sure kids like Beckett get the best possible care.
So, as a whole, Beckett is doing great. He continues to be a happy kid with a positive demeanor. We couldn’t be prouder of the challenges he continues to overcome. He has worked incredibly hard this year already in school and has the grades to prove it. He was so proud of himself when he brought his report card home. School takes a lot of time and effort for him, significantly more than most kids, so to see positive results has been very encouraging to him. He loves his siblings well and is always looking out for them. As we head into the holidays and especially Beckett’s birthday, we are excited for all this next year has in store. As always, thanks for continuing to be with us on this journey.
Yesterday was a good day. Beckett’s cath ended up being completely diagnostic, meaning they saw nothing abnormal that required intervention. Praise God! Anesthesia also double checked about the liver biopsy because he was willing and wanted to get them done together. Due to Beckett’s liver function labs coming back as normal, the specialist was not concerned at this time and said the biopsy was unnecessary. Yay for one less thing! Beckett always comes out of anesthesia a little grouchy so he was begging to go home. Once his bed rest was up he jolted out of bed, which caused him to vomit. That of course didn’t help. The car ride home was a little rough as he was nauseated, whining and his groin was bothering him where they do the cath, but thankfully I had some zofran on hand. He fell asleep for the last part of the trip which was a blessing. By late evening he felt well enough to eat and began acting more himself. He is back at school today. Thankful for great news and more happy days with our boy! Thanks for all the prayers and encouragement! We felt them all. I pray you all know we read and treasure each comment, text, call and personal interaction! Thank you!
Where do I begin? This has been an eventful summer and start of the school year. Let’s get the heavy out of the way. This past July, while on vacation with our family in Michigan, Beckett had a day where he seemed not himself. He was tired, complaining he couldn’t catch his breath, and his oxygen saturations were lower than his normal. We called the doctor and made him spend time resting. Thankfully, he didn’t have any more issues while we were there. The day after we got back, his cardiologist was able to get him an appointment. His EKG had some abnormal beats, but nothing too concerning, so he had him wear a heart monitor for three days. We saw the doctor again two weeks later. The heart monitor also showed some abnormal beats, but they were all coming from the upper chamber of his heart and not the lower, and were also around 2%, which he said they just want less than 3%. So again, nothing he was concerned about. He also had an ECHO that showed everything was working well from what they could see from the outside. So, the next step was to perform a heart cath in order to look at numbers and his anatomy from the inside. That is being done tomorrow, 9/24 and we would greatly appreciate your prayers. We also saw a liver specialist last week because kids with a Fontan, which is the surgical repair Beckett had done, will end up with some degree of liver disease. This makes them more prone to cirrhosis, as well as liver cancer. There is no way to tell what degree of liver disease they will have, nor is there any treatment for it. So, they monitor liver tests every year. This is the first year Beckett is having this done. They were hoping to do a liver biopsy as well as a liver ultrasound while Beckett is in the cath lab tomorrow so that he only has to have a sedating procedure once; however they were unable to make it work. He did have liver function labs as well as a hidoscan last week to check the scarring of his liver and his liver function. The liver function labs were normal so they aren’t as concerned about doing the biopsy at this time. Beckett has looked good for the most part since that time on vacation, so we are optimistic of good results tomorrow.
Beckett also saw his neuropsychologist two weeks ago for a full day of testing. He has these evaluations about every two years, and I have been anxious about it since the last one. Last time they were concerned Beckett might be diagnosed with a global cognitive impairment, which they described as a fairly severe label and one we didn’t necessarily want. They had given us lots of recommendations on ways to try to help Beckett over the next two years, and we did our best to get him services and help him at school and home while having three other children and allowing him to be a kid himself. Beckett has also been on ADHD medication for over two years. Needless to say, I have been dreading that we didn’t do enough. GOOD NEWS: he does not have a global cognitive impairment. He does still remain significantly behind grade level but he made improvement in all tested areas. He continues to have issues with distractibility and impulsivity, but I don’t know that we can ever get that to go away. After doing my own reading/research last spring, I requested Beckett be tested for dyslexia while at this appointment. Beckett is still reading at about a 1st-2nd grade level. The biggest plus from these evaluations, was that Beckett was diagnosed with a reading disability/dyslexia. While this is another diagnosis and hurdle he now has to climb, it gives us the ability to get him the help he needs. Overall, the appointment went really well and Beckett did great considering he has to complete their tests/evaluations for around 5 hours.
Now for the fun stuff. Beckett again participated in Eastbrook’s Summer Academy and had a great time both learning and doing enrichment activities. He got to be the bat boy/dugout “coach” for Milo and Declan’s baseball team, and was even given a medal when they won the tournament championship game. He went to Michigan for a family vacation and got to play golf with the grown-ups. He went to Miracle Camp and had a blast! He participated in the neighborhood triathlon, the town labor day activities, many bike rides, and family sports in the yard. We went to the zoo. He went to Ohio to see family and our annual visit to the Fulton County Fair. He moved to the middle school this year as he is now in sixth grade. He gets to change classes, have lots of different teachers, do a locker combination, and see his grandma there almost every day. Beckett is in his second year on a robotics team in town. He is the 6th grade football team manager, which has been awesome for him to still be a part of the team even though he can’t play. This year he has also chosen to play golf and takes private lessons every other week from Jonny’s friend/IWU golf coach and Beckett loves it. He hopes to be on the 6th grade team in the spring. He continues to see a counselor every other week and I have allowed him a little freedom to ride his bike there himself. This is probably a bigger step for me than it is for him, and I have a watchful eye at the clinic that makes sure he is there safely. He also got to join the church youth group now that he is in middle school, as well as help in the kids area on some Sunday mornings. He is a wonderful brother and I wish you were all able to see how well he takes care of and loves on his sister. Life is busy, but it is so full of fun, laughter and love!
With all of the life going on, I must take a moment to both acknowledge as well as thank those who are helping us stay afloat. From taking our kids to events, from events, babysitting, or just being present in their lives, we are beyond grateful to have you supporting us in life. We are especially thankful that you are coming alongside us and cheering on not only Beckett, but the rest of our kids as well. Our family is not short on love from those around us and we could not ask for a better community. You know who you are. Thank you for showing up in our lives. It truly takes a village.
We have been on cruise control for quite a few years now, which makes it easier to push to the back of my mind that Beckett’s health is and always will continue to be fragile. This summer thrust my mind and emotions back into those early days of constantly worrying when he would have a problem, and how bad it would be. We have sung a song in church the past two Sunday’s called “I Believe” by Charity Gayle and the lyrics have resonated deep into my core. They have been a very empowering reminder that God, “You are who you say you are. You do what you say you’ll do. You are always faithful”. God is for me, but more importantly he is for Beckett.
Today marks the end of Congenital Heart Disease Awareness Month, so why not end with an update. This update is long overdue, and we apologize that we have been out of touch. We know you continue to support Beckett from all over the globe, and we pray you know we do not take that for granted. In short, Beckett continues to thrive. Praise be to God! But let’s go back in time, roughly a year now, and I will try my best to catch everyone up.
Beckett loves school and is sad when he misses for illness or appointments, so when COVID hit last year and it was cancelled all together, Beckett struggled more than we had anticipated. He did not adjust well to the lack of routine he would have had had he been in school, nor did it help that some days Jonny was home playing teacher and some days it was me. He missed his teacher, his friends, his normal. While this did not set him back any more than the other kids experiencing the same scenario, it certainly did not propel him forward. His first-grade teacher recommended keeping him in first grade another year, for multiple reasons, mainly being social development. Jonny and I wrestled with this through most of the summer, literally up until about two weeks before school started. After many conversations between us, asking Beckett his feelings, and wise council from friends, family, and school professionals, the decision was made to allow Beckett to move on to second grade with his peers. So far, this seems to have been the right decision, and we pray in ten years we still feel the same. Beckett has had and continues to have a wonderful group of teachers, aides, and even bus drivers that pour into him daily, address his specific needs and love him genuinely. We could not ask for a better situation. They constantly work to make adjustments as he both struggles and succeeds, and he continues to move forward in closing the gap of his delay.
From a medical standpoint, Beckett continues to have little hiccups along the way, but is overall in very good health. He had pneumonia in January but stayed out of the hospital and only missed a day and a half of school. He is also having some feeding issues, nothing major, but he has a difficult time chewing and swallowing meats, which he desperately needs in his diet. We have been back in touch with the speech therapist he had for over four years, and we are looking to start him back into some monthly appointments to retrain him in this way. He wore a 24-hour Holter monitor in August, which monitors heart rate and rhythm and that was normal. Riley Hospital has recently started a Fontan clinic (Fontan is the name of the final open heart surgery Beckett had to repair his defect), and Beckett was seen there this past month. It is a multidisciplinary clinic staffed by Cardiology, social work, nutrition, and others when necessary, to view Beckett in a more wholistic manner. This clinic is in keeping with the top five pediatric cardiology/cardiovascular surgery programs in the country and national standards. The goal is to monitor current needs as well as early recognition of potential issues. Beckett will be seen by this clinic every 3-5 years, and they will help ensure he isn’t missing any necessary tests, procedures, blood work, etc., as there are guidelines as to how often things are to be done. With that being said, Beckett had a great report from Cardiology. They continue to be pleased with where he is and have no areas of worry where his heart is concerned. However, Beckett did require significant blood work prior to this appointment and his protein levels are low as is his HDL (good cholesterol). He needs to have adequate protein intake which is why he needs to be able to eat meat and is therefore working with speech therapy again. We have also been trying to find other areas of high protein to work into his diet in the meantime. They weren’t significantly concerned with his low HDL, because his LDL was also low (which is good), and they said that could be reason his HDL is low, because his body doesn’t need to make an excessive amount. But they still want us working in healthy fats, which we are trying to increase. They also monitor his liver very closely. Studies show kids with a Fontan procedure often have liver issues due to decreased blood flow. Beckett has had elevated numbers in the past, they have done ultrasounds and monitored his labs, and they have always returned to normal. His GI doctor is in close contact with a liver specialist in his department, and the clinic stated they would also pass his information to her as well. In the future Beckett will need a FibroScan to measure the density/fat buildup in his liver. They will also do a liver biopsy with his next heart cath as these kids are at higher risk for developing liver cancer. Again, this is all proactive treatment so that things aren’t missed in the beginning stages should they occur. Beckett will also be seeing a geneticist as they work to see if these heart defects are linked to specific genes, as well as undergoing neuropsych testing to see if they are ways we can better assist him. At the clinic he also saw social work who talked to him about friends, school, his feelings, and his awareness of his defect. They will also help set Beckett up with a counselor/therapist should we choose as these kids are prone to anxiety and depression. That feels like a lot of information, so if I missed something, or you have questions, feel free to reach out to us. It was a very encouraging appointment, and as we were leaving the nurse said, “I remember when he arrived here. I never thought I would see the young boy standing in front of me that I do today. He is truly a miracle”. Amen to that!
As for the fun stuff, Beckett continues to play baseball, soccer, basketball and take swimming lessons. We are also looking into placing him into some type of martial arts for both discipline and coordination. He has recently become very interested in drawing and this is a great tool for him as his fine motor skills continue to be delayed. He loves to watch how to draw videos on YouTube, and is getting so good! He also recently placed second in a math game/test at school, and he could not have been prouder. This past summer he was able to attend a week at summer camp the same week some of his cousins were there (I was able to volunteer as the nurse and keep a distant eye). He loved it and has already asked to go back this summer. We spent a week with Jonny’s family at Camp Maranatha on Lake Michigan, but unfortunately missed our annual summer vacation with my family at Lost Lake Woods Club due to COVID and hope this summer will be different. Beckett loves going up there where he can ride the golf cart looking for deer, ride horses, and swim in the lake. We also moved last summer, and Beckett loves that our new house has a playroom and a huge yard. He has loved all the recent snow and would play in it for hours if he could stand the cold a little better.
This month I’ve have spent a lot of time reflecting. Reflecting on the days we have endured, the blessing that Beckett is, and the testimony of his life journey. It is easy to get caught up in the normal hustle and bustle of the day to day and see Beckett as a happy and healthy young boy with little concern for his heart defect (not altogether a bad thing). But the reality that has hit me hard this month is that Beckett will never be “normal”. His heart will never be normal. He could take a turn at any moment and his life is not guaranteed to us. Beckett’s congenital heart defect never gets any less serious. Sometimes as his mother, the fears I have for him and over his life can be overwhelming. However, in the midst of these worries and fears, he lives life to the fullest just as “normal” as any other eight-year-old boy. It is easy to get caught up in the what ifs of his life, but just as God was faithful during so many uncertainties in that first year, he will continue to be faithful in the exact plan he has for Beckett’s life. So, we will continue to cherish each year, each day, each moment we share with him on this earth. One day at a time.
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!
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!
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!
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.
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!
Heart of Beckett 