2547180091

©2019 by Daniel’s Lion Heart Foundation. Proudly created with Wix.com

Setbacks and PTSD

It has taken me 3 days to be in a place where I felt that I could write about what happened Thursday night. Even now I don’t feel “comfortable” or remotely okay, but I feel that I must put it into words. Maybe then it won’t haunt me every time I close my eyes.

After the Glenn on Tuesday, Daniel swelled up like a balloon. On Thursday it was especially noticeable. His eyelids were so bulging that his eyeballs looked tiny, like they were buried in his skin. The skin on his arms and chest was stretched tight, and his bloated neck was the stuff of nightmares, especially considering there was an IV in his jugular vein. When he cried, his whole swollen head would turn purple. It was absolute torture to see my sweet baby boy this way. I can’t imagine the pain he must have been feeling if it was so agonizing just to watch.

I took a picture of him like this, but I won’t share it here. He is too vulnerable and exposed. It would be wrong to share such a picture with the world. This picture is only for him to see one day. He may not want to see it, but I will keep it. It is his story, after all. His life.

Thursday night Daniel seemed to be doing well. Even though he looked like a red, swollen balloon, his sats were good and his heart rate was strong. He looked horrible, but all the “numbers” were good, so doctors weren’t worried–until he de-satted.

He was so stable that I went to John and Christi’s house to shower and sleep for the night. My mom is able to sleep any time and anywhere, so she volunteered to stay bedside so I could sleep in a bed. I had just stepped out of the shower when she called me.

“Staci, they are having to bag Daniel. He stopped breathing. He wasn’t moving, and he didn’t wake up when they bagged him. They are going to re-intubate.” Her voice was dripping emotion. The words she said to me were scary; her obvious fear was terrifying.

All I said was, “I am coming.” I felt like my heart was crushed. I thought Daniel was dying. I was so scared his heart had stopped, that he had “coded” and that he would be brain damaged even if they brought him back. I was crawling out of my skin. My chest felt tight, and I couldn’t breathe. It was like my soul was itching and burning. I felt so incredibly helpless.

When I arrived at the hospital, my mom was in the waiting room. They had kicked her out of the room while they intubated him. All she knew was he had stopped breathing and had de-satted.

“His heart was strong the whole time, Staci. It never wavered. He just stopped breathing,” she said. She was feverishly biting her cuticles on both hands. I sat next to her in a daze. We have heard many times that having to re-intubate is bad news. Even though I had just heard some encouraging news about his heart, my mind still went to the worst case scenario.

We sat there for over thirty minutes. In my mind, I was imagining the doctors doing chest compressions and hooking him up to ECMO. I was so scared a chaplain was about to come around the corner and tell me Daniel had had a stroke and had brain damage or something. When I absolutely couldn’t wait any more, I called the PICU and asked to speak to Daniel’s nurse. Instead, the attending physician answered the phone.

“You can come back now. No problem. We are finished,” he said.

I practically ran back to Daniel’s room. My biggest fear is that Daniel will die without me there. I want to hold him in my arms while he passes away. I don’t want him to be scared. I want his last earthly memory to be of me holding him, so I was trying to get back there as quickly as possible.

All the lights were on in the hallway and in his room when we got back there. It looked like mid-day, but it was 10 p.m. Multiple doctors and nurses were crowded in the hallway. Dr. Modem, the attending physician that night, met us.

“We think he aspirated. When the nurse had to bag him, we saw some milk in the back of his throat. We think his sats fell because he aspirated his stomach contents. His heart rate never fell, and he was never without oxygen for any length of time. His sats never fell below 60,” he said.

“Is there any risk of brain damage? Are you worried this happened because of his heart function?” I asked, worst case scenario again crowding out all logic and reason.

“No. We think he aspirated. His airway was swollen because of being intubated for the surgery and because of the acid in the reflux. His lungs are probably sick. We need to keep him intubated for a few days to be sure he doesn’t get pneumonia.”

Maybe some other time I will write about the remainder of the night. I just don’t have the energy to relive it right now. I was in a daze, in a living nightmare. I was so scared. Going through something like this– long term hospitalization several hours from home– will cause you to get to know yourself really well. You learn when you have had enough, when you absolutely can’t go on for one more second. When I woke up Friday morning, this is how I felt. I couldn’t stay in that hospital for one more hour. I had to leave. I needed David and Hannah. I needed to hug them, snuggle with them, see their smiling faces, hear their delightful laughs, hold their hands.

I needed to remember who I am apart from this hospital. I needed to remember that I have a life away from all the machines, remember that I don’t live in Children’s Memorial Hermann Hospital.

Thank God for Brian. He is the only one I felt comfortable leaving with Daniel. Here is the thing– bedside vigil in the PICU is soul-crushing. Especially when your baby is intubated. You are absolutely helpless. There is nothing you can do. You can’t even rub the baby’s head because it agitates him more. All you can do is sit and watch him sleep, watch him turn purple and silently cry when they change his diaper and move him, watch his sats go up and down, his heart rate rise and fall. It is exhausting and life-changing. Brian is so strong. He is an amazing husband and father. He can handle it. I know others can also handle it, but I don’t want them to have to.

Why even stay bedside if you can’t comfort the baby? Because we are Daniel’s advocates. We are his voice. Staying connected to his care makes me feel connected to him when I can’t hold him. When I know the plan for his care, I feel less panicked. I feel less afraid when I understand the vision. I can’t leave my baby there by himself.

I had a wonderful two days at home with David and Hannah. David was stuck to me like glue. This whole experience has changed him. At the age of barely 4, he has begun to contemplate life and death. Last weekend I told him, “David, when you’re scared, you should pray to Jesus. He will send his guardian angels to watch over you, and he always hears our prayers.” David’s thoughtful response was this: “Mommy, if Jesus hears our prayers, then why do people get sick and die?”

At first I was dumbfounded. I wasn’t expecting such a question. I answered like this:

Me: Do you remember the story about Joseph? What did his brothers do?

David: Sold him into slavery.

Me: Yes, and that seemed like a very bad thing, right? Joseph was scared and he went to jail. But what was Joseph able to do because he was sold into slavery? How did he help his brothers?

David: He saved them from the famine.

Me: Sometimes, things seem very bad, but God has a better plan. God’s plan always works for the good, even when we don’t understand it.

David looked thoughtful, if not fully convinced. I told Brian about our conversation, and he had a similar story. Last week, David had asked Brian, “Daddy, are hospitals supposed to help people?” Brian answered, “Yes, that’s what hospitals are for.” David followed with, “Well then why do people die when they go to the hospital? Like Uncle Gary. He got sick and went to the hospital and died.” Gary died 8 years before David was born. Apparently, he saw a picture of Gary on Pam’s phone. Pam told him that was her baby brother, like Hannah is his baby sister. She told him he passed away many years ago after he got sick. David’s mind immediately jumped to Daniel, and he has been worrying about Daniel in the hospital.

David didn’t leave my side the whole weekend. Hannah is more free spirited and independent. At 2, she is happy as long as her needs are met. She misses me, of course. But as long as someone is there to hug and kiss her and feed her, she is okay. One of the things I think about often is how David and Hannah’s lives are changed by Daniel. How has our whole family been touched by CHD? That’s a topic for another day.

Saturday night was the contemporary service at our church. Still feeling defeated, I went and sat in silence. I couldn’t muster the energy to sing along. I could barely keep my mind on the service. As my return to Houston came closer and closer, I could feel the anxiety twisting in my chest.

When the band started playing the song “Start A Fire,” I realized that I was mad at God.  When I heard the lyrics, “Start a fire in my soul/Fan the flame and make it grow,” I cynically thought, “Better be careful what you wish for.” If Daniel’s suffering is the catalyst through which God “start(s) a fire in my soul,” I’m very sure I would have never asked him to “fan the flame and make it grow.”

Frequently with my children, they have begged me not to make them do something. This time, I was the one begging. In my mind, I was begging God, pleading with Him: “I can’t do this. I don’t want to do this any more. I can’t do it. Please don’t make me do it.” Do what exactly? I’m still not sure.

After the church service, I went to thank a generous friend for a gift she gave me. She pulled me into a hug, and I immediately started crying. This woman is one who is familiar with the kind of pain and fear I felt. I knew she understood what I was going through, and knowing she could empathize somehow made the burden a little less hard to bear. Another dear friend came up to me and hugged me, too. She is also one who has experienced loss. She said, “When my husband had a blue spell, I remember driving to the hospital in fear.” When she said that, I remembered she had experienced the sickness of her husband and his loss. When she hugged me, I cried harder, and the connection was like balm to my soul. These two women held me, and I felt restored.

Then one of our retired pastors came up to me. He held my hand and said, “I was thinking about your struggle the other day, and I was reminded of the last verse of Psalm 121. It says, ‘The Lord preserve you,’ God is keeping you close and lifting you up.”

Before church I had prayed, “Father, forgive me for fearing and not trusting in You. Forgive me for being like Peter in the storm. I am looking at the waves around me and I’m scared. Give me strength and confidence in You.” An hour later, he sent these three people people at the exact perfect moment to give me strength.

This morning while driving back to Houston, I remembered the verse, “Rejoice always; pray without ceasing. Give thanks in all circumstances” (1 Thess. 5:16-17), and I remembered reading about Corrie Ten Boom in The Hiding Place. While she and her sister were imprisoned in a concentration camp, Corrie described the flea-infested wooden barracks. She and her sister and the other prisoners were crawling with fleas all over them. Corrie’s sister insisted they thank God for the fleas. Corrie was aghast and refused at first, but in response her sister reminded her of God’s command to “give thanks in all circumstances.” Later in the book, the Nazi guards didn’t want to go into their barracks because of all the fleas, so Corrie and her sister were able to have a Bible study group in there without being discovered.

I realized that I should thank God for everything, even the fact that Daniel is re-intubated. God is always working for the good. Somehow He is using this whole experience for His glory. Then I remembered Dr. Sohns’ reminder that God is keeping and preserving us. It occurred to me that God will give me the strength. I don’t have to be strong enough on my own. I can’t do it by myself. Thanks be to God, I don’t have to. He has given me the gifts of family and friends who hold me through the storm, and the Holy Spirit who brought all this to my mind and helped me remember that God is far greater than my mind can fathom.

We still don’t know what happened Thursday night. Did he aspirate and de-sat, or did he have apnea because of morphine and then vomit when they bagged him? It depends on who you ask. For now, Daniel is intubated. They plan on taking his chest tubes out and extubating soon. They are starting him on sildenafil so that they can wean down the nitric oxide. They are starting him on methadone and ativan so that they can wean him off the fentanyl and versed. Things are going in a forward direction. His lung secretions from Thursday night grew something, but they don’t know what. They started him on antibiotics. They are checking his blood for infections to rule anything like that out. Please continue to keep Daniel in your prayers. I desperately want to hold him. It has been 6 days. I miss my baby.