-Dr. Smith

I need a good cry. God knows I wish I didn’t feel so tense or discouraged about this but I do. Now, I’m glad I got to know certain things ahead of time because knowing does help…and it is practical since you can make plans…God was good when He, providentially, guided our steps to CHOP and connected us to doctors who gave us (before Ela was even born) a broad look at the journey that she would have and some potential hard things along the way. 

 

However, while knowing ahead of time is good and practical…the pressure, and grief, and sadness that you feel when you go through those hard things is still very real. Ela’s condition is not good. Her pressures are too high. The collaterals are all over the place, so many that her heart looks like it is tangled in thick spiderweb. While some kids can live and function relatively well on the Glenn until they are 6, 7, or even 8…Ela’s present condition would not allow for that. As a matter of fact, the recommendation is to bring her back in June and to commit to stay until she receives a heart. Which could be another 6 months…not to mention a year of recovery if God preserves her life through a transplant.  

One of the biggest surprises in this cath was the presence of AVM’s (Arteriovenous Malformations). These were not present in the last caths and if I understand things correctly, these begin to appear in those who suffer from poor oxygen flow and worsen the collateral situation. There is no treatment for AVM’s. They might be able to do something here and there (eventually) but the only long term solution to the AVM’s and collaterals is a new heart and the improved oxygen flow that comes with it. 

Please continue to pray for us. The next month and a half are going to be emotionally tough for many reasons. We have to make all the relocation plans for Leslee. We have to make plans with my mom for her to move in and help with the boys. We have to train Josiah and Ela to be away from each other for quite some time. God’s plan right now seems to be for our family to be apart from each other and He has not disclosed to us if it will be 5 of us or only 4 of us after everything is said and done. This is God’s plan. God’s plans are perfect and good for us…but that doesn't mean they are easy or enjoyable. Pray for us to be steadfast, for steadfastness when it has its full effect produces perfect servants…complete servants who lack nothing (Jas. 1:4).