Brian Knippenberg

@rankheresy Praying

@JCRyle Hold hands and pray out loud everyday

Godly married couples of 10 years plus, please drop one to two pieces of wisdom to newly married couples...

@mark_joubert Praying

Please please pray and share friends. Things have taken a very bad turn.

@mark_joubert Praying

Prayers appreciated as Gus just went in for a routine cath procedure. He looked good going in today. Hoping for a good report. They expect to check the heart function, remove a central line, and perform angioplasty to rehab veins for future access. Thanks, friends.

@mark_joubert Thank GOD & still praying!

BIG GUS UPDATE: Hello friends. An update is long overdue. This update is good, and we hope it offers some encouragement in these anxious times. Over the last week, Gus was able to successfully transition from the CICU to the PCU. We are probably only weeks from going home...what a thought! The Lord has been so kind in bringing us this far! Gus is doing well, though he is still struggling to put on weight. He's had some bumps, but overall his move to the PCU this last week has been positive. Lots of smiles today supply the evidence - Gus approves. Our team (of amazing people) has been working on nutrition and fluid balance. Because Gus was diagnosed with end stage renal disease (ESRD) and his kidney function is so poor (virtually non-existent), balancing his needs on peritoneal dialysis (PD) is an ongoing challenge. It's going well. He's currently on 12 hours of dialysis every night. As much as we are excited to be going home, we are also feeling the weight of the challenges ahead. Going home after a heart transplant was a challenge we were mentally prepared for. Going home with the demands of caring for someone with ESRD is another story. White cardiac stuff is more dramatic and acute, the kidney stuff is more demanding and taxing. The way I've been putting it is, we are not simply taking Gus home from the hospital, we are taking the hospital home with Gus - without all the amazing help. Add to that the fact that nearly eight months in, we are mentally, emotionally, and physically drained - and it's daunting. The demands on us are increasing at a time when we are most feeling the exhausting of the last eight months. Not complaining - God has been gracious - just being real. In a way, we are coming to the end of one stage of treatment and embarking on a new one. This next year we will be monitoring his heart health closely and maintaining his kidney care in hopes that he will be able to get a kidney transplant. We are working to prepare our home and looking at all the things we'll need to get for his dialysis care. We are working on building our support team. We will need the help and respite to run this marathon. We want to give Gus the best care so he has the best chance of long term success. Thank you for all of you who have followed our story and prayed earnestly for us these last seven months. We will need prayer as we enter this new phase of life built around dialysis and kidney care. We will continue to provide updates. We're not going home cured - we're going home to manage serious illness. I'll probably start a Caring Bridge or something like that to centralize updates. Again, much thanks, friends. "I will praise you, Lord, with all my heart; I will tell of all the marvelous things you have done." Psalm 9:1

@mark_joubert Still praying!

Update on Gus: he's doing well overall despite the recent ESRD diagnosis. Today was a big step forward as he transitioned from manual dialysis to a cycler (CCPD). He's down to 16 hours of dialysis. If all goes well, we anticipate moving out of the CICU to the PCU sometime within the next week. It's a good progression, but it will be hard to leave behind the amazing people we've been doing life with for nearly 7 months. How has it been that long? It's hard to believe but we definitely feel it. We're EXHAUSTED. It's a tired that sleep doesn't fix. On another note, I'm looking to do some posts over the next few weeks essentially retelling our story thus far - a chance to process and review where we've been and how far we've come. God has been gracious. Thanks for following our story and offering your support, prayer, and encouragement along the way. #TeamGus #GoGusGo

@mark_joubert Still praying

Hello, friends. What follows is the latest update on Gus' condition and progress. Long overdue - I know. Thank you for your continued patience! In short, Gus is doing well in day-to-day terms. In the long term, the situation with his kidneys is not much better. He has now reached the point where a formal diagnosis of end-stage renal disease (ESRD) is appropriate. What this means is that we are adding long-term dialysis support and the likelihood of a kidney transplant to our heart journey. Gus continues to recover from his tricuspid valve repair surgery. His chest has healed significantly from the sternotomy to the point where the sutures have been removed. He only needs oxygen support at night. He is fed mostly via NG, but speech therapy continues to work with him on bottle feeding. His meds are now given almost entirely through the NG - meaning fewer lines. We've enjoyed many smiles lately. With his left-sided palsy, this takes the form of very endearing (and cute) half-smiles. His legs have been kicking with energy and excitement. He is doing remarkably well for all he's been through and everything he is dealing with. The dialysis situation has also progressed nicely. He is at his goal amount of dialysate and we are working to get his total dwell time down to the point where he can be transitioned to a cycler. Once he is successfully on a cycler, we will be moved from the CICU to the PCU. This is the natural progression towards going home - something we are both excited about and incredibly apprehensive about. That will be a delightful yet difficult transition. As I said above, today marks a somewhat arbitrary date for Gus' kidneys. The time has come when it is appropriate to diagnose him with chronic kidney disease and (potentially) end-stage renal disease. In practice, it doesn't change much, but symbolically, it hits hard, especially six months in. We never really anticipated our heart journey becoming a kidney journey too, and the prospect of it all is, frankly, daunting (to say the least). The days and weeks ahead will continue to bring direction into greater focus. We would ask that prayers be made for us in our weakness and for Gus in his continued recovery. He is well into teething, which adds additional discomfort. There is also some concern about swelling and 'puffiness' in the face - is it his SVC? Is it simply the effect of the steroids? A future cath procedure will likely give us answers. Either way, it appears to cause discomfort, so we appreciate prayers for us and his team as we continue to care for him. Speaking of prayer... Tonight, members of our local church are gathering after our evening service to pray - to pray, should God will it, for a miracle: for a recovery that, at this point, appears beyond the reach of medical means. They will likely pray for our Father to continue, by the intercession of his Son and through the power of the Spirit, to graciously sustain us and give us wisdom - as he has been - through the difficult days ahead. We will ultimately pray for his will to be done and his name to be glorified. This is no cop-out, but appropriate deference to One who knows the beginning from the end, One whose ways are not our ways, whose providence is often mysterious, and whose love and goodness surprise us in ways beyond our ability to imagine - the greatest expression of all, of course, being Christ's cross-work, considered foolish by many. Wherever you are, if you wish to join us this evening in - as some have often put it - "storming the throne" for these things, we would be incredibly grateful. In a word - pray and share! God has already done many great things for us and our son. He has answered many prayers. He has done things that defy expectations. We will keep praying. We will continue to give thanks. Each day is a gift. Gus made me a father, and that is a gift beyond reckoning. Hopefully our next update will come sooner. 😉

@DJM549845319274 Praying

@mark_joubert Still praying!

Happy six months Gus! Hard to believe we're halfway through his first year. We've been through so much together. God has been kind. Gus is doing okay and remains stable. His kidneys still aren't doing great, but we're working to increase dialysis passes. He's a little more uncomfortable because of that, but he's making progress. The goal is to get his fluid balance more consistent and stable and transition to a cycler. Keep praying with us, friends. Thank you so much!

@mark_joubert Continued prayers

180 days in, here's the latest: today, following a fever, Gus tested positive for rhinovirus (the cold) - typically not a big deal, but in his case, potentially serious. Also, to follow up on his TEE from earlier this week: the findings explain why his TR has persisted post-op. Following several more stable days where Gus was more comfortable and sleeping better, Gus came down with a fever last night. Today, cultures confirmed the presence of the rhinovirus (the common cold). For most of us, that wouldn't be a big deal. For an immunocompromised patient like Gus, it has the potential to be serious. Our team is monitoring him closely. We're praying for this to pass without incident. Earlier this week we had another TEE (transesophageal echocardiogram), prompted by several concerning echocardiograms that suggested his TR (tricuspid regurgitation) had become severe again following his recent annuloplasty. He did well for the procedure and the findings were insightful. The good news is that the TEE, which is more accurate than the echos, suggests the regurgitation is not severe, but mild to moderate. Further, we know that nothing done during the surgery to repair the tricuspid valve failed - the work done during the annuloplasty was intact. We are praising the Lord for this. We did, however, learn that one of the three leaflets falls short of completing the seal (a process called coaptation), leaving a gap in the valve. This is the cause of the continued regurgitation, and there's no good way to resolve it. In itself, it's not serious. The only reason it raises concern is because of the ongoing struggle to recover his kidneys - which, as I said in our last update, are not doing well. For now, they will look to manage the TR medically. The current goal is to increase his dialysis fluid and wean the frequency of passes in hope that we can transition to a cycler. Once we get there, it is one more step towards taking him home. The waiting game continues. Please pray for us and our team as they seek to prevent complications from his cold and balance his fluids while trying to provide the best environment possible for his kidneys. Pray for Gus' comfort as he fights this virus. Thanks everyone.

@mark_joubert Still praying!

Over the last week, Gus has done well in terms of post-operative recovery. He had several days of discomfort and delirium, but he seems to be moving past that. He's taking a bottle again. He's alert when awake. Unfortunately, we've had two discouraging developments re: his heart & kidneys. Despite what were originally promising results, it appears the tricuspid regurgitation (TR) we sought to address in surgery last week has gone from mild back to severe - as it was prior to surgery. The cause of this is unknown. Gus will have another TEE (transesophageal echocardiogram) tomorrow to get a better look at the heart's function and anatomy. Hopefully we will learn why this regress has occurred. It could be any number of issues. Perhaps the valve has gotten worse. It could be a fluid balance issue. Maybe something done during the surgery has since failed - we simply don't know. What we do know is that valve repair surgeries are very complex and don't always produce the desired results...and Gus rarely does things the easy way. As for the other development: the most recent renal scan has shown further deterioration of kidney function. While the kidneys are still perfusing, they are not perfusing as effectively as they were a month ago, with little to no output. This suggests the prognosis for his kidneys is poor. Even if they recover, the likelihood of CKD and eventual renal failure is increasingly likely. It's hard to hear news like this 177 days into our journey with Gus. We're tired and worn out. We're thankful for our friends and family who continue to support us, as well as for all those who are following our story and offering their prayers and encouragement. We continue to confess that God is good. Even in the midst of difficulty, there is beauty. There are precious, happy moments that, apart from the amazing care Gus has received, we wouldn't have had with him. We pray, and we hope, and we love. God's grace will prove sufficient. We'll have more updates once we know more.

@mark_joubert Still praying!

An all too familiar sight...hard to see him sedated and intubated with tons of meds again, but he did well today. We are praying for his blood pressure to normalize overnight. It's higher than we'd like it to be, but it's easy to push him into hypotension - so it's a hard line to walk. His bleeding from the chest seems to be slowing down significantly, but it's still a factor. They had to give him more blood. Pray the bleeding stops. He's a tough kid. He's been eating through his sedation, stirring, raising his arms, chewing on his pacifier. Unfortunately, now is the time to keep him still and asleep. Doctors were impressed with how lively he has been this evening -- too lively! Pray he can calm down and rest overnight.

@mark_joubert Praying

We have a new date for Gus' open heart surgery. He is scheduled (second attempt) for this Monday, May 20. He'll go in around 8 am. After prep, surgery will probably begin around 9 am. It will be a long day. The goal is to repair his tricuspid valve as much as possible and reduce tricuspid regurgitation as part of a larger effort to stave off renal failure. He's in a good position despite the kidney issues and recent infection. He's made amazing progress over the last month. Some of the biggest concerns going in include the risk of severe bleeding at the onset of the surgery (due to scar tissue from the first surgery), and post-op recovery complications (e.g. heart stiffness, diastolic dysfunction). Thank you for the prayer and support. God has been kind. His grace is sufficient.

@mark_joubert Continued prayers

Hello, friends. It's been awhile since I've updated anyone, largely because there have been a lot of uncertainties over the last week. A few days ago I thought I would be posting about a surgery scheduled for today. It didn't happen because of an infection. So here's the latest. As I hinted at in a previous and somewhat lengthy post, we learned over the last few weeks that Gus would likely need to have another open heart surgery to address mechanical issues with his tricuspid valve. While the tricuspid regurgitation he is experiencing isn't critical in and of itself, our team is convinced his kidneys will not recover without addressing it. So after significant deliberation and discussion we and our team are agreed it is a necessary step. This obviously came as a huge blow to morale. The thought of rewinding the clock to post-op recovery (given his dramatic and unusual transplant experience) is daunting. Our team recognizes that going back in this early after his body has begun to heal is risky. Doing the surgery doesn't guarantee his kidneys will recover. Not doing it almost certainly guarantees they won't. All our backs are against a wall. The surgery had been scheduled for today. Then - a fever came. Over the weekend Gus had a fever as high as 102. Lab work showed the presence of bacteria in blood - a technical diagnosis of bacteremia. Well, the fever broke within hours and has yet to return, and while he has physical symptoms of an infection at this time, the positive culture was enough to give us pause. In order to facilitate a regimen of antibiotics, the surgery has been rescheduled for early next week - likely Monday or Wednesday. If anything, this gives us more time to be with Gus before a risky surgery. It gives us more time to pray for his kidneys to recover on their own. It gives us time for us to ask you, our community of friends and followers, to pray for us ahead of what will be a very long day and another lengthy recovery. Something that heart parents experience that can be hard to explain to those who are unfamiliar with it, is this difficult position you are put it where your child appears to be doing so well, and yet under the surface something subtle and potentially deadly might be going on. In situations like these, whether it's a crucial new surgery, or another surgery in a long line of progressive surgeries, you have to give up a child that looks to be doing so well knowing that they're going to come back and they're going to look really rough for a while. Gus has made significant progress, but his kidneys remain critical. This surgery could help. Please pray for us as we feel trepidation in the face of this new hurdle. We are so thankful for our medical team who have answered all our pressing questions, listened to all our concerns, and demonstrated sincere compassion and care for us and our son. We know who we're sending our son to OR with. We know they will do everything they can to give us the best outcome. We are blessed to have such a great team, and we recognize that is not an experienced everyone has. On a good note - over the weekend, Gus got to meet family that had yet to be introduced. It was sweet to show him off to a grandma and several aunts over the Mother's Day weekend. Gus is now on fortified breast milk after completing a lengthy regimen of monogen. We hope not to see any chylous fluid in response to this. That's all for tonight. We'll be posting more frequently in the days ahead. Thanks for your support.

@mark_joubert Praying daily

Hello, friends. Here is the latest update on Gus. Lots to cover in this one. We're catching up on incremental developments over the last few weeks and briefing you all on some new and concerning challenges that have developed. Thanks for reading and praying for us all. As I've mentioned in previous updates, the day-to-day with Gus has been consistent. The three ongoing objectives have been: 1) weaning his sedation meds, 2) increasing his feed to help him gain weight, and 3) caring for his kidneys with the right fluid balance and ongoing peritoneal dialysis. He is still on hourly passes. With the first, he's made remarkable progress. He gets all but one of his meds enterally. While he's on a variety of medications, he is close to being completely off the sedatives. It's hard-won progress. It's hard to see him fight through the withdrawals. His team has been aggressive but patient and compassionate. As a result, he's much more alert, and we're working on more developmental and rehabilitation goals. With the second, it has been mixed. He's still being fed through the nasogastric (NG) tube. His feeds have increased, transitioning from constant feeds to condensed feeds. Unfortunately, he's been throwing up regularly. The bouts of emesis are likely a result of 1) the discomfort that attends the sedation weaning, 2) the adjustment of having food in his stomach - before this, he was being fed with a nasojejunal tube that goes directly to the intestines, and 3) the increased abdominal pressure and discomfort associated with peritoneal dialysis. He's gained weight, but he's not where he should be. He's also working with swallow therapy on the bottle. Feeds are hard for kids in his position. As for the third issue - the kidneys - the news is less encouraging. Despite some good days, the overall trend is not favorable. His urine output is still quite minimal. His renal function labs show key markers hovering at concerningly high levels. He got another renal ultrasound this week to evaluate how well his kidneys are getting perfused. The results suggest it is worse, not better than it was a few weeks ago. This leads to one of the more concerning, and certainly one of the more daunting developments we've had in the last month or so. It requires a bit of context. Since Gus' heart transplant, when his new heart failed to start as expected, our team has been monitoring his heart function closely. While the overall trend has been promising, one area of the heart has concerned us for a while - the tricuspid valve between the right atrium and right ventricle. There have been persistent signs of tricuspid regurgitation (TR). TR occurs when the tricuspid valve between the right atrium and right ventricle doesn't close completely when the right ventricle contracts. This causes blood to flow backward into the atrium making the heart work harder. There was hope that the TR resulted from fluid balance and systemic pressure issues that would resolve as the right side of the heart recovered and the fluid drainage was addressed on our trip to Vanderbilt. Unfortunately, the TR has not gone away. In his last visit to the cath lab, our team conducted a TEE (transesophageal echocardiogram) for better heart imaging. The findings were discouraging. The TR is primarily a mechanical issue with the heart. The tricuspid valve is damaged - probably from the original trauma the heart went through during the transplant. The little tissue strands that hold the valve's leaflets in place (where the term "heartstrings" comes from) may have been damaged during an episode of ischemia. It wouldn't be so alarming and so urgent if it wasn't for the kidneys. TR is a problem, but it isn't always an acute problem that demands immediate intervention. However, when you have kidneys on the verge of renal failure, not having good perfusion due to a leaky valve can be devastating in its effect. Of particular concern is that we are now more than halfway through what our nephrologists believe to be a 12-week window in which the kidneys can recover. What does this mean for Gus? We're uncertain, but the possibilities are daunting. We will know more in the next few days. Our team is continuing to deliberate on what this means and what the best way forward will be. A few weeks ago, we felt like we were on a trajectory that could have us home in a matter of weeks. We know now we are on the verge of what could be many more difficult weeks. For those of you following our story and praying for us, we ask you to pray with us that: 1) Gus' kidneys would recover and his urine output would increase, 2) that God would grant our team the wisdom and insight they need to address the TR issue, with all the daunting implications it involves, 3) that Gus would continue to gain weight and keep his feeds down, 4) that God would sustain us - five months in and we are burnt out and exhausted. The news about his heart and kidneys took the wind out of our sails. I don't want to end without saying that God has been kind. He's given us more days with Gus than we would have had if it wasn't for his kind intervention and the amazing team of doctors and nurses he blessed us with. Gus has made incredible progress. He's teething. He is discovering the world with his hands. He's holding his own pacifier in place! God has encouraged us by all he has done to persist in prayer. We continue to come boldly before his throne to cast our anxieties on him, knowing he cares for us. Our greatest desire is that God would be glorified in us. Thank you for praying with us. As we learn more in the days ahead, I'll provide further updates.

@mark_joubert Continued prayers

Hello, friends. Gus is in the cath lab. He looked good going down this morning. No plans to attempt a heart biopsy unless there is an especially opportune moment to do so. The main goal is arterial rehabilitation to give us better access for the future. We'll update later.

@mark_joubert Still praying!

Hello, friends. Gus is doing alright. He's had a few rough days/nights, likely due to the withdrawals as he is weaned from sedation. He went back on oxygen support the other day, but only minimally. Kidneys have shown encouraging signs, but urine output is still poor. Tomorrow he has another visit to the cath lab (we are oh so tired of cath lab days, but they come with the territory). The goal will be similar to the last lab visit: angioplasty of his femoral arteries so they provide easier access for future cath procedures. They may try once more for the heart biopsy. They'll get some.other measurements as well. He's the second case tomorrow, so there's no telling when we'll go down or get back. Please pray that, like last time, all goes smoothly. Please also continue to pray for his kidneys and for his comfort as he adjusts to fewer meds. Thank you all.

@mark_joubert Thank GOD n still praying

Hello friends. I apologize for the delayed update. The last week has been a whirlwind of adjustments and changes - mostly good. Gus is doing really well. His meds have been weaned considerably, his second chest tube removed (woohoo!), and he is breathing room air! The kidneys remain a major obstacle to his progression. His renal scan (to follow up on that for you all) verified that his kidneys were indeed damaged, but they are still perfusing blood, which was encouraging. It means the possibility for recovery is still there. However, his urine output is still minimal, and the kidneys haven't responded to diuretics. Our nephrology team is optimistic, but for now all we can do is give the kidneys the ideal conditions for recovery, wait, and pray. He's still on peritoneal dialysis with hourly passes. Ideally, we'd like to see the kidneys recover to the point where such frequent dialysis is not needed - or not needed at all. 137 days with Gus at the hospital. God has been kind to us. Every day with Gus is a gift. Thank you for continuing to follow our story and pray for us.

@mark_joubert Still praying!

Gus is making strides. He's off IV sedation. His a-line was removed & he's getting cuff pressures now. He got to go outside with Mom to the hospital garden today - only his second outing! Please pray for a kidney imaging test planned for tomorrow. Renal function is still poor.

@mark_joubert Still Praying !

Gus did well today. He was in the cath lab for 5-6 hours total. His team was patient and persistent. Despite not getting the access they wanted, they got a lot done. They couldn't get the biopsy due to maneuvering risks (risks we are glad they did not take), but set themselves up to (hopefully) get it next time. Gus came back to the room and was quickly extubated again because he was doing so well. For all this we are thankful. His nurses did so much (and are doing so much even tonight) to see him through a long day. So appreciative! The nephrology team consulted with us today and as we understand it, they still believe Gus is within a narrow window where some degree of recovery is possible. They want to continue to give the kidneys the ideal environment in which to recover and monitor their progress. Tomorrow we will hold the peritoneal dialysis and add diuretics to see if his kidneys respond with greater urine output. Later next week we will do more advanced imaging. In all, there are a lot of ways this could go. For now, we wait and pray while his team monitors and troubleshoots. Our church family took time to pray for us this evening, and we were greatly encouraged. Thanks to all who continue to pray for us.