Riding the waves of HEMI Mustard Rastelli

October 4, 2015 3pm

I feel like this might be a broken record, but no extubation today. Joseph needs to work on a few things. Pray for
1. Pressure and swelling in lungs to go down which should allow him to breathe on his own more
2. Take more unassisted breaths.
3. Remain calm under his sedation to allow healing to take place

Since this isn't my first run around with this I have learned the importance of taking care of myself. Today I went to church with my family and enjoyed worshipping with others. We were joined by the missionaries that are here from India whose daughter had brain surgery on Tuesday. The sermon was about preserving the truth of the gospel. Although we talked about this in relationship to conflict I think about what we did in bringing Joseph into our family as our son. Adopting is preservation of the gospel to the fullest. We are not super heroic but because I fully believe It is not about me that loving a child with a complicated heart defect can be made elegantly perfect by our Lord.

Oct 5, 2015 11:40 am

Extubation this morning! Now sporting our new pressure support system mask. Today we work towards getting his lungs improving so they don't need so much auxiliary support. Pray for the fluid in his lungs to decrease. Pray for his two heart systems (the Glenn and the hemi mustard rastelli to start working in sync rather than competing. Long run pray for his atrium rhythm to get going to avoid a pacemaker

Monday Oct 5, 2015 10 pm

So thankful for the breathing tube out of his mouth. He is now on the c pap machine which is assisting his breathing and supplementing his oxygen with nitric oxide as we were before. The nitric oxide has been helping to relax his stuff lungs to allow the blood to flow more efficiently. Problem for the day....they took away all sedation medication! He was fuzzy through the day and has become more alert times throughout the day in which he is not impressed with his new mask! He is such a good boy an for the most part does not mess with it. But when he does it comes flying off with a vengeance. The episodes are usually precipitated by his need to cough. But that hurts😢so he panics and his stats drop real low. He can't sustain his breathing right now without support. Pray for this as it is his next big hurdle. He still has swelling and fluid in lungs being managed. Pray for me as it is very hard to see your child suffer awake. Pray for his emotional well being as he is more aware of his constraints and how this will affect his bonding with us. Pray that he will see us loving him even in this really hard place and not be traumatized.

Tuesday 10-6-2015 4:00 pm

Two steps forward, one step backward. With the removal of the the ventilator and now bi pap machine it has revealed the true reason for his underlying breathing problems. Through ultrasound and multiple x rays today it was confirmed he has a damaged nerve which is causing paradoxical movement of the diaphragm. His lungs should expand or move downward when he inhales but his left side moves upward. In addition this space is already diminished due to his mesacardia, where his heart sits midline. Bottom line....he needs surgery to repair this soon. Surgeon in surgery now and we will talk with him soon as to when it will be. As early as tonight possibly tomorrow.

I did get to hold him twice today and rock him to sleep once. Treasure the sweet moments you have with your children, in moments like this you never know how many you will have. Take the extra moments they request , show them what they mean to you.

Tuesday 10-6-2015 7pm

Change of plans for the good. Spoke with surgeon . He had been in another surgery when decision was made to move ahead with a procedure to correct his paradoxical functioning diaphragm. The plan is to wait and see how he does. His breathing has improved over the course of the day. This was a big day for him coming off the pressure support and he needed some time to bounce back. His best therapy for the day was snuggling with His sister. So pray for the damaged nerve to be restored and him to be able to begin to take steps moving forward. Pray for him to feel comfortable during this time and perseverance for all our family members, including the children.

Wednesday 10-7-2015
Physical therapy gone bad! As we have learned in our journey to follow this is not our "plan" but the Lords will be done. Today was a long arduous day of suffering for Feng Yu. His body is exhausted and tired. Some things are beginning to work well like his "dumb" sinus rhythm woke up and seems to be keeping pace and his Glenn procedure has accepted his new hemi mustard rastelli friend circulation. Those are huge accomplishments and for those I am grateful. Right now his lungs with fluid and paradoxically moving diaphragm is making breathing difficult and his recovery near impossible. So as a team we have all decided it is best for him to have surgery tomorrow morning to tack down his left side of the diaphragm. They will also put in a feeding tube and new PIC line for his medications. His body is just fallen behind and weak so we need to get a jump ahead on nutrition until he feels better to eat. 

2 Corinthians 12:9-11New International Version (NIV)

9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.