We are back from the wedding weekend. We had a great time but certainly wished we could have been there as a complete family. Josiah was well taken care of while we were gone by his wonderful nurses and extraordinary grandparents. Apparently Mindy got Josiah to smile at her. I'm not sure if I believe her.
So the results of Josiah's heart cath showed that he is in need of another open heart surgery and not the scheduled 2nd stage surgery for HLHS (the Glen). He is not a candidate for that surgery at this time because of his lungs. What they learned from the cath is that his right lung is getting beat up because it is having to do all the work. The blood that leaves the right lung which should be fully oxygenated at 100% (even for HLHS babies) because that is when it is the most saturated, is only 84%. This shows the MD's that his lung is not functioning well enough. The artery that feeds into the left lung is very tiny (2mm, his right artery is 5mm) and so there is very little to no blood flow to the left lung, thus overwhelming the right lung. So Dr. Bradley needs to repair the left pulmonary artery in hopes that more blood will flow to the left lung and Josiah can begin using his left lung.
The complication is this. Josiah's left pulmonary artery (LPA) is not only narrowed in the section leaving the heart but it is narrowed all the way into the lungs where it branches out and feeds the different lobes of the lung. Dr. Bradley can only fix the portion near the heart. Once it goes into the lung Dr. Bradley cannot do anything with it. The hope is that if we fix the portion closest to the heart it will allow more blood flow and will allow the parts we can't repair the ability to grow. The MD's said there is a saying in Cardiology... "more flow, more grow." We are praying for growth. The deal is this, doing nothing will only hurt Josiah, doing something is very risky and may or may not help. So we do something and pray for the best. If it doesn't work we have a whole new set of questions to start asking. We will save those for another day and look toward tomorrow instead. One day at a time.
Surgery is scheduled for tomorrow at 7am. It will be open heart. Josiah will be on the heart lung bypass machine while his heat is stopped. It should be a 5-6hour surgery. It's really much harder emotionally this time because we know a whole lot more. The saying that ignorance is bliss just might be true in this case. We know just how risky this is, we know the complications that could arise, we know just how long recovery could take, we know we won't be able to hold our son again for a long time.
So here is the pray list...
-for Dr. Bradley (our surgeon) to make the best decisions about what to do once in Josiah's heart
-that Josiah will tolerate bypass and his kidney's especially would be protected
-that this surgery will allow there to be more blood flow to Josiah's left lung
-that surgery doesn't stir up all the lymphatic drainage Josiah struggled with last time
-that this would ultimately work and Josiah will be able to breath on his own
Thank you so much for your prayers.
Here is the new outfit we just had to buy Josiah. It hangs in his room because he can't wear it right now. In case you can't read it, it says, "Chicks dig Scars"
mom2lo Thank you for sharing the additional information on Josiah's surgery. It especially helps to have a specific prayer list so we know what the needs truly are. I am already praying for this surgery and for God's touch on Dr. Bradley, his staff, and especially Josiah. I can't imagine the situation you're in, given that you have so much information this time around. God is good. He is faithful. He holds Josiah's life in His hands and only asks that you rely on Him and keep your faith and trust in Him. You and Milo are such incredible parents and Josiah is so lucky to have you! Please be strong and know that you and your entire family are being lifted to our Heavenly Father for strength during all of this. Please keep us posted on Josiah's progress during the surgery tomorrow.
"Nothing, you see, is impossible with God." ~ Luke 1:37 (MSG)