Really slow progress....

Friday, October 2, 2015  9 pm

No extubation today. Another xray showed he now has Pulmonary edema, which is swelling of the lungs because of fluid. Why? There could be a few reasons and hopefully just because of his traumatic surgery on Tuesday. They will work tonight to get the excess fluid off his lungs to prevent any damage. If things do not progress in a positive direction they will look to a TEE or heart catheterization to diagnose if there is an obstruction in the pulmonary veins. He has defied most typical treatments. His body and anatomy are specially designed and think right now to give Dr's and nurses grey hairs!
Prayers for tonight.
1. Pulmonary edema to go away!
2. Fluids to reduce around his whole body.
3. As they wean his o2 that he would be able to maintain his o2 at least 90.
4. No fever/infections
5. blood pressure remain stable

The sweetest thing tonight before the kids at home went to bed we face timed. The girls got to see their brother and were able to say good night and I love you to him! The picture is of Feng Yu's sweet face I feel in love a year ago and we said Yes, Lord this is going to be our son! No matter what! We love you sweet boy.

Saturday 10/3/2015 3 pm

Feeling a bit muddy today??? The picture is from a few weeks ago when the kids found the mud on the track to play in. So today seems another day to stay the course with some hope shining through, but meantime, we feel in a mud pit! Slight improvement, steady numbers, but not enough to extubate. He has slowly allowed them to reduce his dependence on some of auxillary support but not so much that he can come off the ventilator. Feeling a bit disappointed at this stage as I felt we would be further along at this point. But I have to keep the whole picture in focus and keep my eyes focused that some miracle happen over the course of time, not just in a few days! The pulmonary edema has stayed unchanged. Echo this morning showed his mitrial regurgitation it better than prior to surgery. All good things. We have lots of room for improvement and many more ways for God to show himself through this process. It's slow and steady. We feel confident in the diligent care he is receiving. Even more so in the one who orchestrates it ALL. So even though we feel in the depths of it now, our hope is in the Lord. So that can make us smile and have hope!

Psalm 100:5 (NIV)

5 For the Lord is good and his love endures forever;
his faithfulness continues through all generations.

Psalm 130:5 (NIV)

5 I wait for the Lord, my whole being waits,
and in his word I put my hope.

3pm  Sunday 10/4/15

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.