HOPE

"Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance, perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us" (Romans 5: 1-5 NIV).

It is difficult to feel hope in a hospital; it is even more so in a children's hospital. Every day I hurt for my own son, and then that pain is compounded by the struggles of the young people (and their families) below him, beside him, and above him. Children are so resilient; their parents, not as much. I haven't rejoiced all that much in Ayden's (our) suffering. I have tried to maintain perspective, and I am always aware of God's Healing Hand, but watching Ayden have difficulty breathing, writhe in pain, become anxious, lose weight, stop smiling... my heart has broken a thousand times over.

I always wonder what people do who don't know the Lord. What hope do they have in a children's hospital? What hope do they have... ever? I know I don't have the strength to get through this without Him. I don't have the patience. I certainly don't have the joy. God builds me up when I am positive that I can't take one more minute of this insanity.

And He gives me things to hold on to... like the fact that Ayden's chest x-rays continue to show lung improvement or that today they are weaning Ayden from the Vapotherm to the nasal cannula. His recent blood gas showed 51% CO2, a big improvement over yesterday's. They are going to restart his feeds. They have taken off Ayden's Lasix drip, and they have made appropriate sedative schedules/doses. When Ayden wakes up, he doesn't automatically start to panic; one can play with him without him crying. (Actually, the only time he seems to get upset is when he coughs or when a white coat enters the room.) Yes, Ayden is still in the PCCU, but he is having an excellent day. There is much rejoicing to be had!