The first round of July hospital stays is complete. We were slated for 48 hours and then home. We were there 8 days.
Got home late Thursday. And now we are heading back up Tuesday morning to begin treatment.
The treatment is designed to hopefully strip the body of calcifications. It has been used in the past to treat Cyanide poisoning and also to remove corrosion from pipes (which sounds horrifying...but we're hoping for essentially the same process to happen in her arteries).
Among other things, low blood pressure and acidosis are the main side effects. The low blood pressure is perhaps the more concerning because with a kiddo in compensated heart failure, drops in blood pressure can be pretty serious.
So, into the hospital tomorrow.
First round of treatment tomorrow. Pretty critical first 24 hours. Then repeating, day after day. 2 weeks of treatment slated for in the hospital...then they will do 4 more weeks of treatment at home. Then if all that goes well, they will do a CT Scan at 6 weeks and determine if it has made a difference or not.
If yes, we continue on the treatment. 5 days a week...1 or 2 hours a day...IV treatment.
If no, prayer (which we have tried to make our first response) will become our last resort.
Here's how we could use you praying in our corner.
Pray for perseverance for Shaina and Chaia. They will have 2 weeks in a hospital. I have no idea how we did 100 days. I about killed everyone in the hospital after 8 days last week. I will be working and commuting.
Pray for discernment for the doctors. Neurology, Cardiology, Endocrinology, and Genetics are all in on this part of the journey. Pray that their collaboration across specialties would yield amazing medical care.
Pray for us to have eyes to see how we can bless others in the hospital. Whether it is other families in crisis, patients, nurses, doctors and medical staff, we want to be aware of how Jesus is calling us to love and encourage.
Pray for C3. She is a young church plant and having leadership that is going through personal hardship can be a lot for a church to take on. Pray that God would allow the Church to hold our arms up through this battle and that we in turn would continue to love and lead wisely. Pray for growth and depth to stir from suffering.
Pray for a miracle. Not sure what else to ask for other than God to do Ezekiel 36 to her heart, Ezekiel 37 to her bones and John 11 to her body.
Was reminded of this quote by influential British journalist Malcolm Muggeridge today:
Contrary to what might be expected, I look back on experiences that at the time seemed especially desolating and painful, with particular satisfaction. Indeed, I can say with complete truthfulness that everything I have learned in my seventy-five years in this world, everything that has truly enhanced and enlightened my existence, has been through affliction and not through happiness, whether pursued or attained….This, of course, is what the Cross signifies. And it is the Cross, more than anything else, that has called me inexorably to Christ.