From the Heart:
Heartbreak, Heroes and Hope – Luke's Fight For Life
By Nina Patten
Photo by Jeff Silker
Television, radio and newspapers have reported the story of Lucas Henze’s injury. Most of the coverage has focused on the legal aspects of his injury at day care. What they cannot tell you in a few short minutes during the evening news is the amazing story of Luke’s courageous fight for life and the Henze family’s journey back from a parent’s worst nightmare. They have agreed to share their story with Womeninc readers:
Kim settles Luke’s car seat on the bench at the coffee shop. After spending the morning at therapy, both are tired and hungry. She looks at him lovingly as she intermittently pumps formula through a feeding tube. In between, she offers him small bites of mashed sweet potatoes and waits patiently for him to swallow. After eating, he is tired and ready for a nap and fusses briefly. Kim nestles his favorite toy lion in his arms and speaks softly to him. Within moments, his eyelids grow heavy. As he drifts off to sleep, Kim begins to tell their story. Shadows of sadness replace the smiles that come when she looks at her sweet boy. Tears quickly fill her eyes as she goes back through the events that changed their family’s life forever.
Bryan and Kim live in LeSueur, Minnesota with their two boys, BJ, age four, and Luke, age one. Bryan is a truck driver. On April 3, 2007 Kim was at work at the St. Peter Community Hospital when the day care provider called and told her that Luke was hurt and she was on her way to the hospital with him. “Bryan was home sick that day. Something made me call him and tell him that he should come. Bryan met [the day care provider] on the road and as he loaded Luke into the car and drove to St. Peter, he knew something was very wrong with him,” Kim says.
Kim met Bryan in the emergency room where Luke was evaluated by a medical team whose quick actions, Kim and Bryan believe, saved Luke’s life. In a short time, a helicopter landed and Luke was on his way to the trauma unit at Hennepin County Medical Center (HCMC). They watched as they loaded him into the air ambulance and did not see him again until more than five hours later.
While Kim and Bryan sat in the family waiting room, a team of HCMC neurosurgeons removed a portion of the left side of Luke’s skull so his brain would be allowed to swell.
Extensive damage to the left side of his brain was elevating the intracranial pressure. Normal intracranial pressure (ICP) is 10 and Luke’s initial ICP was 36.
Kim and Bryan knew that Luke was seriously injured but were unprepared when the surgeons finally came and delivered their devastating news, “They told us that they did not think he was going to make it. We couldn’t believe what was happening. There are no words to describe the feeling.”
Luke was taken to the ICU where another dedicated team of medical professionals ultimately saved his life. Wiping away tears, Kim continues, “Once they got him into ICU, it took them several hours to get a central line in because he was so small. It was hard to find a vein. The Pediatric Intensivist would not let them give up. He said they would not stop until it was in. His persistence saved his life. Getting into surgery as fast as he did and the team not giving up made the difference.”
“When we did finally see him, he was just lying there. You can’t ever imagine having to see your child that way, let alone an 8-month-old baby.” Luke’s injuries were devastating and extensive. To list a few, Luke had a traumatic brain injury, bleeding on the brain, increased intracranial pressure, respiratory failure and shaken baby syndrome. For the first few days, Bryan and Kim had little hope that Luke would recover. As Luke continued to fight Kim says, “Bryan and I had to decide what we were going to do. We decided that no matter what, we were going to give him every chance to live. Thankfully, he was strong enough to pull through.” In spite of the immense odds against him, Luke began to improve slowly. Kim, Bryan and BJ stay with Kim’s mother in Stillwater when they are not at the hospital. Kim keeps friends and family informed of his progress on their CaringBridge Web site. This free site allows families to post information, lessening the need for making multiple phone calls. Kim’s regular entries provide a day-by-day account of Luke’s recovery along with milestones and setbacks along the way:
Monday, April 9, 2007
He was able to have formula through a feeding tube today and so far that has gone fine. If you pinch his little toes, he pulls his leg up, another good sign.
Thursday, April 12, 2007
This afternoon we had a meeting with the doctors after Luke was seen by the neurologist. The news they had for us was always in the back of our minds but now we have heard it out loud. There is a possibility that Luke may never walk again; he will be confined to a wheelchair. He may never be able to eat again and will have to be fed by feeding tube. He may never be able to talk to us. And they also told us there is a possibility Luke may be blind. We are really shaken by all of this. There is no way to tell any of these things for sure but that is what the neurologist concluded by his exam and review of the CT scans.
Wednesday, April 18, 2007
OK, so OT (occupational therapy) came by and said, “We are going to sit him up on the side of the bed and Mom, you can hold him there and give him a hug!” Daddy [Bryan] went back to work on Monday but doesn’t like being away. BJ and Ginger [the cat] are doing pretty good at Grandmas and the fish is on an extended sleepover at a friend’s house. We all try to be together for dinner every night.
Thursday, April 19, 2007
Today the CT scan showed that the fluid over Luke’s brain has come back and there is more now than before so tomorrow he will have surgery for a shunt placement. A shunt will drain extra fluid from the brain into the abdomen. Not what we wanted to hear, but not the end of the world either.
Friday, April 20, 2007
The surgery went well and the shunt is doing what it is supposed to do. We won’t know if it will be a permanent thing but it’s better for him now. The neurosurgeons said that they have been discussing his progress and are all very impressed with him. They are keeping him quiet tonight because it’s been a rough day. Mom really needed to get out so it’s dinner at Grandma’s with BJ and Daddy. All in all, it was a good day and a step toward recovery.
Monday, April 23, 2007
It’s been 20 days since we have actually held him in our laps and rocked him like a baby. Today I got to hold him in my lap and rock him. It almost felt like they were handing him to me for the first time after he was born. I think I will get to hold him every day now. Hopefully on Wednesday it will be without the breathing tube!
Wednesday, April 25, 2007
Luke had his breathing tube out at 9 am this morning. From his first breath to now he has had no trouble. He has been a little grouchy, I think because his throat is sore. They also got rid of his urinary catheter. He is going to need some time to get over the aches and pains but it’s like music to hear him cry! Daddy is holding him for the first time since 4/3 right now – he is very happy!
Sunday, April 29, 2007
Our address has changed!! As of 4 pm, Luke has moved from the ICU to the regular pediatric floor. He had many of the stitches in his head taken out yesterday and some re-stitching of the areas that did not close well because of the swelling. He will have the bone put back as soon as the other sutures have healed. We hope our stay at the hospital is coming to an end.
Friday, May 4, 2007
Got to go for a stroller ride but the stroller was a little small and he hated it!! He cut two new upper teeth, we think that may have been part of his bad day the other day.
Wednesday, May 9, 2007
HAPPY MOTHER’S DAY TO ME!! It’s official, Sunday is the day!! Lots to do and lots to learn, but cannot be more excited. Luke is doing great, but Mom can’t sleep here any more!!
Saturday, May 12, 2007
Keeping my fingers, hands, arms, legs and feet crossed that they let us go home. Spent much of the day getting things ready at Grandmas. I am just ready to get back to our lives. We know nothing is going to be the same but we are ready to make our new routine. We can’t thank everyone enough for all the support and prayers. You have all had a hand in our HUGE MIRACLE!
Sunday, May 14, 2007
OK, I’m here! But it’s been quite a whirlwind getting us in and settled but we are in and the bags are at least shoved in the corners. It’s great to be here and Luke is doing great. He had the best night’s sleep in weeks last night.
Tuesday, May 22, 2007
Luke is going to have surgery in the morning. I have been concerned about an area of stitches on Luke’s head that seems to be stretched over the open ridge of bone that is left of Luke’s skull. The doctors saw him today and decided that something needed to be done.
Wednesday, May 23, 2007
The surgery went fine and Luke is doing well.
Friday, May 25, 2007
The new suture lines are so nice…if you can say that about stitches…I didn’t know how nice they were supposed to look. His hemoglobin has stabilized so he won’t need any more blood. We are going to try hard to get out of here but we’ll do what’s best for Luke.
Thursday, May 31, 2007
It seems there are not enough hours in the day! I hope everyone knows that Luke came home on Monday.
Wednesday, June 10, 2007
We had a doctor’s appointment on Tuesday and Luke had all of the stitches out. He looks great. The doctors want to wait two more weeks to see him and schedule the surgery to put the bone back in. We are so anxious to get back to our life and try to regain some of the life that was taken from us. I need to put the rug back under my feet!
Monday, June 25, 2007
He’s just out of surgery and we were told that everything is fine. If all goes well, we should be out of here in a few days. What a long road!!
Tuesday, June 26, 2007
When Luke opened his eyes this morning and looked at me, he gave me his little half-grin and wrinkled up his nose so I know he’s good. They are going to leave the drain in his head for another 24 hours. Their hope is the brain will move back and fill the cavity that was there and not just refill with fluid.
Thursday, June 28, 2007
We are back in Stillwater and very happy, now we can start working on moving home.
Wednesday, July 25, 2007
We made the trip home and the house is a complete disaster. Grandma has come down to help with the adjustment. She has been a real trooper and wouldn’t have made it without her. I went back to work today. It is really great to see everyone but it’s really hard to leave my babies and trust again.
Starting Over
Kim explains how she and Bryan have adjusted to life after Luke’s injury, “I have wondered many times why this happened. I had to decide that it is not worth living in the past because I have to deal with today and look forward. That is the only thing that will make Luke recover as much as he can. It’s the only way I stay sane. That’s what gets me through the day. I’m constantly looking for the next thing he’s going to do. We don’t have time to be stuck.”
Luke goes to therapy in Mankato twice a week where he is making progress. Kim says, “He is reaching for things. In fact, they are working on walking and he has a small cart he moves around in. He’s amazing. Every day he does something new.”
Kim and Bryan do not know how his development will progress, “There are two different schools of thought: One is that he is so young that the brain is constantly making new pathways – maybe the dominant side hasn’t been chosen yet so he could maybe have the right side take over. The other is that most people with brain injuries regain the things they were able to be before the damage. That would be difficult for an infant who wasn’t even crawling yet. There is not much to recall.”
“Once other children with brain injuries leave the hospital, they go to a rehab facility. They spend months there and have intensive therapy. There’s nothing like that for infants. So we work with the pediatric care services and the school system for Luke’s therapy.” Luke sustained damage to the left optic nerve but the right is fine. They don’t know how much he can see but the addition of vision stimulation therapy has helped him focus and the therapist says he has great potential. Luke’s physical growth has not been affected by the injury; he is well within the normal limits of any 18-month-old infant.” No matter what happens, we’re just so happy that he’s here. We’ll just do what we have to do – so he has lots of therapy.”
Luke’s pleasant personality continues to emerge. Kim says, “He was always a smiley baby and he has not lost his good disposition. Now he laughs and smiles. It makes it all worth it just to be able to know that he is happy.”
“We have every hope that he will be able to walk again. We look back over the past months and marvel at how far he has come in such a short time.” Realistically she adds, “It’s been hard for me. I don’t think of myself as anything other than Luke and BJ’s mom. I just do what I have to do. I do my life. But I’ve always been the person ready to help someone else. It’s hard to be on the receiving end – very hard.”
For all their family has been through, Kim and Bryan feel extremely blessed, “We try not to feel sorry for ourselves but rather to make the best life we can for our family. It’s not a hard decision to make. We could never have made it through the past year without the help and support of our families, friends and co-workers.”
On April 3, 2008, the one-year anniversary of Luke’s injury, a flag was flown over the State Capitol Building with the following heartfelt message from Bryan and Kim:
This flag is dedicated in honor of Lucas James Henze, who on this date one year ago, was severely injured at the home of his daycare provider.
Let it serve as a tribute to the men and women who saved his life. Especially those at St. Peter Community Hospital, Hennepin County Medical Center and the EMS.
Let it stand as a reminder, that in this great country, every child should be safe.
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