The Kerr Family

I’m writing this update from a beautiful reading/quiet room on the 11th floor of Helen DeVos Children’s Hospital, overlooking the lights of Grand Rapids. Jen and Owen are down in our room on the 6th floor getting some much needed sleep.

We’ve been at the hospital for nearly thirty-five hours. In that time, almost every aspect of Owen’s health has gone as well as we could have hoped for.

The surgery took less than three hours and had no complications. Jen and I felt total peace as it was going on; we could feel God’s presence and knew so many were supporting us.

The whole procedure was done via scope and required no larger incisions. One thing I had not expected–the surgeon brought pictures to the consultation right after it was over. We saw views from inside Owen’s chest during the surgery. We also saw pictures of the lower left lobe after it had been removed. The difference between the healthy lung tissue and the removed mass was very evident.

Owen was extremely drowsy when we got to see him afterwards. His face and color looked great, but he never really came to a full, alert state all afternoon and evening.

He woke a couple times when his pain medication was wearing off and cried pretty hard. These were probably the most difficult times of our visit. But the staff were very quick to provide help and give him an additional dose.

He was still experiencing some pain this morning but managed a couple smiles. By mid-day, he was back to smiling a ton–something we’re pretty used to with Owen.

The chest tube is still in place to drain fluid from around his left lung. They will shut the pump off in the middle of the night, do a final X-ray tomorrow morning, and then remove the tube if everything still looks good.

Barring any other complications, we should be able to take him home tomorrow afternoon. I know his brother and sisters are anxious to have him home. And we look forward to being together as a family again.

In two days Owen will have half of his left lung removed.

Am I afraid of having my baby go through such a major surgery?  Absolutely!

This isn’t the first time I’ve faced a surgery that filled me with fear.  At the age of 15, I learned I needed jaw surgery.  I resisted the idea completely but finally agreed after persuasion from orthodontists, oral surgeons, and my parents.

The biggest fear I had with jaw surgery was throwing up.  You see, when your jaw is wired shut (as mine was for six weeks), the act of vomiting can be fatal.  My surgeon instructed me the carry wire cutters with me everywhere, just in case.

I was afraid of the future and afraid of dying.  Yet it was through this surgery that God changed my life forever.

I had a lot of questions about death and heaven.  If I were to die, would I go to heaven?  I went into surgery with these questions unresolved.  Days later, I was actively seeking answers.

It was Easter Sunday 1995.  My face was still swollen from surgery, but I didn’t care:  I wanted to know more about Jesus.  Friends had invited me to their church’s Easter drama called The Passion Play.  I attended, and it was there I found the answers I was looking for.

For the first time in my life, I saw who Jesus was.  I had never before understood His love for me, but suddenly everything was changing.  I understood how Christ’s death and resurrection made it possible for me to be forgiven and start a new life with Jesus.  In that moment everything became clear to me, and I knew exactly what I wanted.  I believed.  I followed Jesus.  And I’ve never regretted it since.

Now, 22 years later, I’m facing another surgery.  This time it won’t be my own physical pain but my child’s.  I’ve wondered what it will be like, wondered if I’ll really have the courage to do what is required of me.

It was in one of these quiet moments that I sensed God nudging my heart.  “I’ve done great things in your life through surgery before, and I’m going to do it again.”

We’ve asked for healing.  We’ve asked God to take this whole thing away.  People from around the world have prayed for Owen, and God has answered in big ways.

But to be free of his CPAM, Owen needs surgery.  It’s scheduled for noon on August 18, and we expect a four-day recovery in the hospital.

I don’t know the rest of this story, but I’m confident God will carry us through the tough times and use this for good.

Courage is not the absence of fear; courage is moving ahead in spite of your fear. If you’re not afraid, you don’t need courage. Courage comes because you’re scared to death but you also believe it’s what God wants you to do, so you do it anyway.  —Rick Warren

Have I not commanded you?  Be strong and courageous.  Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.  —Joshua 1:9

We recently met with a surgeon, James DeCou, to review the results of Owen’s CT scan. This test gave a much clearer picture of his left lung than had been provided by the x-ray shortly after birth.

The mass on the lower portion of Owen’s lung is still there. It is a portion of tissue which did not develop normally and which is not contributing to the normal function of the lung.

Based on these images and everything we’ve learned about this condition, we’ve made the decision to take our little Owen to Helen DeVos Children’s Hospital on Friday, August 18th for surgery. The procedure is expected to last around four hours; the goal is to remove the lower lobe of the left lung.

Owen is not currently experiencing symptoms from this condition. However, there are a few reasons to remove the mass:

• The abnormal tissue makes kids more prone to pneumonia and other infections
• If left untreated, there are slightly higher risks for the tissue becoming cancerous later in life
• Removing the non-functioning tissue makes space for the healthy tissue to grow and increase lung capacity

The surgery will be done using a scope. The procedure, requiring three incisions, will first close off the blood vessels feeding this portion of Owen’s lung. It will then be carefully removed and drawn out through the largest incision. A tube will remain in place for a short period after the surgery to help drain fluid which sometimes forms around the affected area. We expect to be in the hospital for two to four days.

Although we’ve known this step was likely for months, it is still difficult to think about taking our sweet, seemingly-healthy boy in for surgery. We know there will be challenges in the coming week and beyond. But Jen and I have peace about the decision and the timing for Owen.

Here are our biggest prayer needs right now:

• Please pray for a smooth and successful surgery. If there are complications, it could potentially require a larger incision and more invasive procedure.
• We need God’s peace and reassurance. We need to feel his presence, his comfort, and have his wisdom if it becomes necessary to make on-the-spot decisions. We also need the strength to say no to worry and what if fears.
• Because of the need to protect Owen from sickness before surgery, we are in a quarantine period right now. We’re avoiding public places and situations which are most likely for our kids to pick up sickness. As a result, we’re a little lonely. We miss all the friends and family God has blessed us with.

Thanks again for your prayers and support. We will post a quick update the day of surgery once we know the exact time the procedure will begin. And we’ll share news as soon as we can after Owen is done with surgery.

Owen’s joy, sweet spirit, and incredible smile have blessed us since the day he was born. We are so thankful to have him and trust God to help us walk through this next step.

 

We are quickly approaching the next stage of our CPAM journey with Owen: the CT scan. On Monday morning, we’ll wake Owen shortly after 2:00 a.m. to feed him one last time prior to his scan. When we wake him again around 7:00, I won’t be able to nurse him. Our routine is to nurse upon awakening, so it distresses me that he’ll have to go without a meal, especially when he can’t understand the reasoning. But there’s a chance he’ll need to be sedated, so that’s why he has to skip his morning milk.

The plan is to arrive to Helen DeVos Children’s Hospital by 7:30 a.m. so they can start an IV. The nurses told me inserting the IV usually makes a baby quite unhappy. The process will hopefully tire Owen enough that he falls asleep, and then they can do the CT without sedation. They may also give him a medication to make him relaxed, but if he cannot hold still for a couple minutes, they will need to sedate him.

On Friday, July 21, we’ll meet with his surgeon, Dr. DeCou, to discuss the results of the scan and make a plan for surgery, if it’s still necessary.

I may have mentioned before that I’m a part of two Facebook groups for the parents of CPAM babies. These CPAM parents have been a huge source of knowledge and support for me during the past eight months. I’ve learned that, like Owen, CPAM babies are born asymptomatic 70% of the time. (I’m so glad that was the case for Owen! Had it not been for prenatal ultrasounds, we would have never known Owen had a lung malformation.)

I’ve also learned that about 4% of the time these masses disappear on their own. About once a month I hear this good news for another baby: how I would love that to be the case for Owen! His x-ray at birth showed shadowing on his left lung, so the mass was still there when he was born. I know without a doubt that God can take the mass away, no medical intervention required. Yet I also know the mass may need to be surgically removed, a journey that will require courage and strength. My heart rests in the goodness of God, no matter which direction our journey goes from here.

We will post more after meeting with the surgeon, but for now please pray for a smooth CT scan Monday morning. It would be such a blessing if Owen didn’t have to be miserable for it.