Daniel Updates 11/20/18

I’m living in a nightmare from which I can’t wake up.

Daniel is struggling. He can’t catch a break. It seems like he has hit every bump in the road possible.

Last week I went home to be with David and Hannah from Thursday through Sunday. My mom and Pam stayed with Daniel here. By all accounts, it was a peaceful four days. Nothing major happened. The plan was to take it slow and steady and give his heart and lungs a chance to heal.

I started having nightmares and stress dreams Friday night. It is difficult being away from David and Hannah, and it is difficult being away from Daniel. Sunday morning I absolutely couldn’t stand it anymore. I came back to Houston early Monday morning.

Almost as soon as I walked in the door Monday, things went wrong. Daniel spiked a temperature of 101.1 and his lactic acid number went up to 4.5. A score of 2 is considered high, so this was not good. It means his heart was working harder than it should. They did blood work and bacteria cultures and started him on big gun antibiotics. The thought was maybe it was an infection, maybe it was withdrawal from fentanyl, maybe it was dehydration, maybe it was a combination of the three? No one knew, so they tried a bunch of different things.

His temperature went down and so did his lactate. His sats increased. He seemed to be having a better day after that initial scare. We kind of relaxed when he responded to the fluid.

Late last night, he started breathing harder. This morning his chest X-ray showed a pneumothorax had developed on his left side. A pneumothorax is a small pocket of air that forms on the outside of the lungs. In and of itself, it is not a serious issue. They usually put a chest tube in to drain the air out. It can be caused by the positive pressure of the Bi-Pap and C-Pap. But they also noticed his right lung, the strong one through all of this, has deteriorated. The pneumothorax, the deteriorated right lung, his fever, and his lactate numbers all indicate something is wrong.

The question is– what is the problem? From what I understand, it could be a couple of things.

1. It could be an infection like pneumonia or even the common cold.

2. It could be a problem with his heart. Is his tricuspid valve regurgitating more? Is his aorta patch sufficient? Is his heart function okay?

Daniel is getting an echo of his heart right now. That will give us more info. He is on antibiotics for the infection.

If his lungs get worse, if his work of breathing increases, if he starts de-satting more, then we will have to re-re-intubate. I am just absolutely heartbroken. I feel like I am drowning.

I am constantly throwing a temper tantrum in my head. I want to throw a fit and scream and hit and kick. I WANT TO GO HOME. I WANT DANIEL TO BE OKAY. I WANT TO MAKE THIS BETTER. I WANT TO SNUGGLE MY BABY. I WANT TO SEE HIM SMILE. I DON’T WANT HIM TO SUFFER ANY MORE.

I can’t do any of this. Leaving his side is unthinkable. The cruel fact is Daniel, physically, is not okay. Not only does he have a severe heart defect, but he is also recovering from his 5th procedure (2nd open heart, 4th surgery) in his short four-month life and he is sick on top of all of it.

Yesterday I read my chronological Bible. I read the account of Jesus praying in the Garden of Gethsemane before his betrayal. A few things struck me.

Jesus was on the brink of incredible suffering– physical suffering of being beaten and crucified, spiritual suffering of being separated from the Father. He took with him his closest friends, Peter, James, and John. He told them, “‘My soul is crushed with grief to the point of death. Stay here and keep watch with me'” (Matt 26:38).

I think I understand a little bit what he was feeling. No one could understand what he was going through. It was unfathomable for his disciples who still didn’t even understand the nature of his kingdom or what he was facing. But Jesus still wanted his friends, his companions, the ones who had walked with him for three years to be with him during his time of intense grief. Similarly, I need Brian with me. I need my mom with me. I am so scared of being alone through this. I am feeling so weak. I need to share this with all of you so that you know and can support Daniel and us in prayer.

Jesus prayed, “‘Abba, Father, everything is possible for you. Please take this cup of suffering away from me. Yet I want your will to be done, not mine'” (Mark 14:36). I am also praying constantly, “Father, with You all things are possible. Everything from You is good. You created the heavens and the earth. You formed Daniel in my womb and knew his story before time began. Father, please heal Daniel. Send your guardian angels to watch over him. Be with his doctors and nurses. Strengthen me and give me peace. Father all this I ask in Jesus’ name. Amen.”

I desperately want Daniel to be okay. I am absolutely petrified that it isn’t going to be. After I read the account of Jesus’ betrayal in the Garden, I realized I skipped a couple of pages, so I backtracked. After praying this, I turned to John 14. The first verse says, “Don’t let your hearts be troubled. Trust in God, and trust also in me.” Another verse says “‘I am leaving you with a gift–peace of mind and heart. And the peace I give is a gift the world cannot give. So don’t be troubled or afraid'” (John 14:27). As I continued reading, a few more verses stood out to me: “‘I have told you these things so that you will be filled with joy. Yes, your joy will overflow” (John 15:11) and “‘I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world'” (John 15:33). I feel like the Holy Spirit directed me to those two chapters, a direct answer to my prayer for strength and peace.

Continue praying for Daniel and for us. I have never been more scared in my life. I am scared of transplant. I am scared of never seeing his smiling face again. I am scared of ECMO. I am scared of him dying. I am scared of him suffering more and then dying after all of it.

Through all of it, I continue to have immeasurable joy. The joy of the certainty of Daniel’s salvation through Jesus. The joy of the certainty that all things from God are good, and that all of this is unfolding according to His plan and purpose, to His glory. Amen.

*Update 1: I have just been sitting here realizing– what an incredible blessing it is to be able to feel even a fraction of what Jesus did.

**Update 2: Daniel’s blood gas numbers look great. His pO2 is 40, his sO2 is 75 (the highest it has been in days), and his lactate is down to 1.0!!!

***Update 3: Daniel echo looks good. His aorta looks good, his Glenn circuit looks good, and his heart function looks good. His valve regurgitation is mild (the same, but definitely not worse).

Thank you, God, for your steadfast mercy and faithfulness.

More updates to come.