BREAKING: President Trump boards Air Force One to head to Mar-a-Lago on the Taxpayers' dime. This trip will cost us $3.1 million, which could be used by USAID to feed 5,000 starving children for a full year.
It will also cost taxpayers 8X the salary that he donated for the entire year, or about 1/4300th of the fully diluted market cap of his Scam Memecoin.
Congrats America. You elected a real Gem.
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.