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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.

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.

Hey friends. Today marks 150 days in the hospital with Gus. I'm sorry I haven't had more updates. Longer update coming tomorrow. Gus is still stable, and he's made progress over the last week, but we have some big challenges facing us and we will need lots of prayer. I'll add some details tomorrow.

Gus is remaining stable for the most part. He's had some discomfort and mild hypotension over the last few days as our team makes adjustments. His chest drainage has reduced, but increased output from his PD drain suggests there may be some accumulating in his abdomen as a result of blocking the duct in the chest cavity (this was a known possibility). Kidneys are still in poor shape, so we are praying for them to recover -- which in turn could help reduce the drainage overall. He's doing well on CPAP trials (intended to test whether or not he can be extubated). So he could have the ET tube removed within the next week. We're thankful and appreciative for how far he's come. We have a great team of nurses and practitioners here at Norton supporting him on this journey. Thank you for your continued prayers.

So -- Gus' procedure today went well. In fact, based on preliminary reports, it went really, really well. The IR (interventional radiology) team was able to access his thoracic duct, get better imaging this time, and succeeded at embolizing a significant portion of the duct. This was what we were praying for. The doctor himself noted that "today was just different -- maybe it was all the prayers." Now we wait and see. It can take time to see how effective the procedure will be at reducing the chylous output. We hope the amazing success of the IR team today can help us avoid more invasive surgical procedures. We also hope this sets us up to return to our 'home away from home' at Norton Children's to work on the kidneys, lungs, and nutrition -- but -- one day at a time. Pray for Gus as he heads into the night and all the sedation he was on tapers off. We hope he's not too uncomfortable and is able to get some rest. Praise God for the answer to prayer and join us in thanking him for the amazing doctor and team that got it done today. If it's the Lord's will, we pray this marks a huge turning point for Gus by removing a major impediment to recovery and progress. Thanks, friends.

Hello friends and family! Today is day 92 of being in the hospital with Gus. Gus is now three months old! I know it's several days since we've provided any updates on Gus. This is largely because not much has changed: the same issues holding up substantial progress continue to dog us. If anything, it feels like Gus has had more setbacks and we are definitely feeling worn down. Last time I used the word "slog" to describe this phase of our story -- a common experience for many heart families -- that word remains an apt description of the last week. Thank you to those of you still patiently following our story as it develops. Here are where things stand and how you can be praying for us. First and foremost, Gus' continues to struggle with chest drainage. This is something we've been dealing with since his transplant. If you recall, he was officially diagnosed with Chylothorax several weeks ago, so we know this fluid is tied in some way or another to his lymphatic system. While we have seen some reduction in chest fluid output, he is still putting out enough to warrant significant intervention. Because fluid balance is so important to heart function, it can contribute to bouts of instability. Further, chyle tends to contain vital proteins, vitamins, immunoglobulins, fat, and electrolytes, meaning that this output is costly, and over time can result in other complications. The chest drainage is probably the most pressing issue we are facing right now. We need prayer for this to resolve itself, otherwise more dramatic intervention may be necessary. Because feeding can worsen chyle output, he remains NPO (no feeds) and hasn't eaten in over a week (though he's still on TPN and lipids for base nutrients). We can't really make significant progress until his chest fluid output dries up. Pray for our medical team, that they would have the wisdom needed to address this. Certain elements of this pathology may exceed the scope of the resources available at our hospital. Please pray for our team as they plan accordingly. Obviously, our hope is that he will 'dry up' on his own over the next few days. Second, Gus' blood pressure has not really recovered since his cath procedure last week. Prior to that, his pressures were fairly stable and he had been weaned off all vasopressors (e.g. epinephrine). Since last week he has needed more blood pressure support. Unfortunately, it also means he's had a higher heart rate. Today he's struggled with hypotension and our team has given him fluids and increased his drips to keep him in a stable position. Gus is also much more tired, probably as a result of the higher heart rate and lower pressures. When he's asleep, his pressures trend lower, resulting in a vicious cycle. The chyle and chest fluid output, which throws off his fluid balance, is probably the primary culprit seeing that his heart function is unchanged. An echo today showed no deterioration in heart function -- we are thankful for that! Third, Gus' right lung has remained stable despite the setbacks we saw last week. He's receiving breathing treatments. He's also having CPAP trials that evaluate his ability to breathe on his own ahead of potential extubating. We would love to see him get extubated. However, we know he is in a weaker condition now than he was a week or so ago. It wouldn't be surprising to see him get extubated and then need to be reintubated. We long to hear his cry again -- he's been intubated since January 16th. Fourth, Gus' kidneys have also been trending in a negative direction. Today he's had very little urine output and that is concerning to our team. This too is probably a consequence of our ongoing struggle to balance his fluids while his chest continues to shed a significant amount of chyle. Fifth, neurologically, Gus has had some strange episodes with what look like seizures. However, EEG monitoring has not shown seizure activity, so it's entirely possible that something else is going on (e.g. electrolyte imbalance, reaction to sedation, etc.). It's also not surprising given the ischemic damage and the brain hemorrhage we know he's suffered. Generally, he's still the same old Gus, and his motor function is good overall, but his eyes have had some abnormal episodes. Our neurologists have told us it would not be surprising if he needs to consult an ophthalmologist down the road. In sum, while we're not in the same dire straights as we were several weeks ago while he was on ECMO support, these challenges are significant and serve as a fresh reminder (despite how familiar all this feels) as to why we are still in an ICU and not a typical inpatient unit. Gus is still very sick and we are not 'out of the woods' yet. Many of you have been asking how you can be praying for us. Please continue to pray with us as we face these ups and downs -- what feels like mostly downs as of late. Pray that, if the Lord wills, his chest output would dry up on its own without some other major intervention. Pray that some solution to the chylothorax would make itself known. We are certainly wearied by the recent setbacks and the lack of progress. Our medical team is still providing excellent support, even in the face of Gus' unique circumstances. Gus' case is a challenging, and at times, bewildering one. Our team is exhausting all options to see him through this. We are, through our weakness, seeking to trust in the Lord's sovereign care. We are submitting to his providence. His grace is still sufficient. Thank you to all of you who are enduring with us in prayer. Thank you for all who have offered their kind thoughts and encouragement. Truly, the support is all very fortifying for us.