Sunday, July 22, 2012

Luke's Story


In the spring of 2000, something so miraculous and amazing happened to my family that there could be no doubt it was the hand of God.  I’m going to warn you.  This is long.  And involved.  And loaded with medical jargon.  But most importantly, this entry reveals a situation in which, despite all rational explanations, God entered into a situation and took control.


About two weeks before Luke was born, I experienced some extremely high blood pressure.  My ob/gyn had warned me of the risks of toxemia/preeclampsia and told me that if I ever experienced any headaches or dizziness, I should come to his office immediately.  I was a high school English teacher at the time, so he also wanted me to have my blood pressure checked daily by our school nurse.

On Tuesday, March 28, 2000, I had a dizzy spell after teaching my first period class.  I went to the nurse, and she told me to get to my doctor’s office right away because my blood pressure was 164/112.  After obtaining  a similar reading, my doctor decided to send me over to our community hospital in Farmville, VA in order to induce labor.  After only five hours, Luke was born.  Brian and I got to hold him for just a few seconds before the nurse wheeled him away to clean him up.  A few minutes later, she came in and said that he was wheezing just a little bit, so she had put him under some oxygen.
That night, the nurses considered his “singing” noise significant enough to call in our pediatrician.  Arriving at the hospital around 10 pm, Dr. Dionisio said that she believed he just had some fluid in his lungs, which could have been caused by such a fast labor and delivery.  To be on the safe side, however, she wanted to run complete blood work and perform a spinal tap on him to check all of his fluids.  Luke did not improve at all in the 24 hours that he spent in Farmville’s hospital (a hospital that did not have an intensive care unit for infants, but only an incubator).

On Wednesday, March 29th,  Dr. Dionisio said that it was time to transfer him to another hospital.  She wanted to know if we preferred going to Richmond or Lynchburg, so we chose Virginia Baptist of Lynchburg, since it was only 35 minutes away.  Brian and I learned that a transport team would be sent from VA Baptist to take Luke there in an ambulance.  My doctor then discharged me so that Brian and I could run by our house before heading for the hospital.  We came home, picked up a few things, and were on our way.  Just before leaving, our pastor met us and followed us to the hospital. 




Luke finally arrived at VA Baptist about 2.5 hours after we did.  We were instructed to go to their NICU (neonatal intensive care unit).  The neonatologist on call came to speak to us and indicated that they had done x-rays, and it just looked like some fluid was on Luke’s lungs.  He said that they were going to continue his oxygen, then look at his blood levels in a few hours.  The family and friends who had gathered there with us left, and then Brian and I tried to get some rest in a parenting room.

We then got some bad news.  Luke’s condition was much worse than what Dr. Willinger had originally suspected.  He came in and told us that Luke’s lungs just were not functioning the way they should, and they were going to try to treat him with “suffactin,” a soap-like substance that opens up the lungs.  This is poured directly into the lungs, then the lungs should open up and begin doing what they are supposed to do.  

Unfortunately, this did not happen in Luke’s case.  Over the next couple of days, the doctors and nurses gave him three treatments of the drug, and during this period, everyone there was absolutely wonderful to us.  Brian and I spent nearly 48 hours continuously crying, wondering why this was happening to our baby.  We would sit by Luke’s bed and watch him struggle with every breath even while hooked up to the breathing machine.  Honestly, I struggled with thoughts of jealousy and even anger at the other infants in the NICU, many of whom were addicted to illegal drugs because of the poor choices their mothers had made during pregnancy.  In all cases, THEIR babies were doing 95% better than mine, even though I had done everything the doctors had told me to do during the nine months.


On Friday, March 31st, the doctors were ready to take more aggressive action on Luke.  Another neonatologist (known for being a bit more radical than his fellow colleagues), took us into a private room and told us that Luke had a 20% chance of survival if he stayed at VA Baptist.  He said that we needed to go to a Level III NICU, which would be a research facility, such as UVA, MCV, or Duke.  After giving us some literature on the treatment that Luke would need, Dr. Magesky started explaining the ECMO machine, or artificial lung machine.  At one of these hospitals, Luke would be placed on a machine that would serve as his heart and lungs for approximately two weeks, while his heart and lungs healed.  When we got to the hospital, there would be a team of surgeons standing by to insert two tubes into his heart.  All of his blood would leave his heart, go through the machine, pick up oxygen, and travel back to the various parts of his body.
Although this sounded like a radical procedure in 2000, the life expectancy of infants on it were pretty good.  Without it, Luke had a 20% chance of survival.  With it, his chances increased to 80%.  Of course we were ready to try the ECMO.  Unfortunately, however, it was not without risks.  Dr. Magesky told us that the very serious risks were:  (1) stroke, (2) bleeding from the brain resulting in brain damage, and (3) AIDS or hepatitis resulting from blood transfusions.  He also told us that there was one treatment that they could try at MCV that would come before the ECMO.  With this treatment, Luke’s lungs would be filled with Nitric Oxide, in an attempt to open them up and jumpstart them.  Brian found this funny since it’s a variation of the chemical put in carburetors.  Dr. Magesky warned us not to get our hopes up for this treatment, however, because it had a success rate of only 10%.





We learned Friday evening that MCV’s transport team was on its way to pick up Luke and should be at VA Baptist around 10 pm.  At 7:30 pm, Brian and I went down to the cafeteria to try to eat a sandwich.  We would be making the two hour trip to Richmond too, so we decided to try to get some energy.  When we had just sat down to dinner, Brian’s pager went off and we got the scare of a lifetime.  It was the NICU, so we left our food on the table and ran upstairs.  As soon as we entered the NICU, we knew something was terribly wrong.  There were about eight people standing around Luke’s bed with several machines that we had never seen before.  (He was already hooked up to around eight machines at that time).  Dr. Magesky came over and said, “Your son has me very worried.  He’s in a death spiral.” 

Those words will stay with me and Brian forever.  At that point, Luke’s heart rate had risen to 200 beats per minute and his blood pressure had dropped to almost nothing.  The specialists believed that either one of his lungs had burst or that part of his heart had burst.

At 8 pm, after hearing this devastating news, Brian and I went into the parenting room, where we dropped to our knees and prayed for one hour straight.  Neither Brian nor I have ever prayed as hard as we did that Friday night, from 8-9 pm, but I am convinced God granted us a miracle.  At 9 pm, we went back into the NICU, scared to death to see what we would find.  There was just one nurse by his bed, who said, “Come on over; he looks good!”  Dr. Magesky came over and said that he just couldn’t explain what had happened, but Luke had stabilized tremendously over the past hour.  All of the xrays and tests they had done on his lungs and heart showed that nothing had burst or collapsed.  MCV’s ECMO team was still on its way.
I can’t explain it, but from this point on a peace came over Brian and I about Luke’s survival.  We knew he was going to make it, no questions asked.  We were prepared, however, to do whatever was necessary for him to survive, but we knew at this point that we would be taking a baby home with us.  Unfortunately, we also knew that the lack of oxygen to his brain during the first 24 hours of his life could possibly have an enormous negative impact on his life.  We braced ourselves for the possibilities of mental handicaps, blindness, etc.  We just didn’t know what we would be dealing with down the road. 

The transport team arrived from MCV.  It included five people:  a doctor (who was on fellowship at MCV, becoming a specialist), three nurses, and a driver.  (Luke had two very expensive ambulance rides during this first week of life!) The doctor looked like she was about 17 years old and spoke broken English, but she was wonderful, as they all were.  They explained that the most dangerous period was going to be in the ambulance, since critical infants could die with the slightest amount of movement (which was the reason why they brought an ambulance and not a helicopter; helicopters experience too much turbulence).  We told that that we would meet them at MCV, since we had been warned several times during this whole ordeal not to attempt to follow an ambulance.

Around 12:30 am, we all left for Richmond.  We left first, then the ambulance past us, and we could see the little incubator in the back.  About an hour later, the ambulance passed us again.  This kind of worried us because we had not seen it on the side of the road, and we thought that they may have had to pull over to stabilize him or something.  We finally got to MCV at 3 am.  The doctor said that they were getting the ECMO team prepared and should be ready for surgery in a few minutes.  One of the nurses came in and said, “You all made really good time.”  Brian told her that the ambulance had passed us twice, and she replied, “Oh, we had to stop and get gas.”  We got a big chuckle out of that, since they had to stop for gas while carrying a critically ill infant.  It’s kind of nice to experience laughter through the tears.

At MCV, Brian and I got to go into another parenting room and lay down for a few minutes.  One of the neonatologists, Dr. Manali, came in and told us that Luke’s blood pressure had her very concerned and it looked like they would be proceeding with the ECMO.  Luke had been on Nitric Oxide in the ambulance, and it looked like his oxygen levels were improving, but they were all afraid that his heart would just ive out.
At 5:30 am, we got yet another knock on our door.  We were expecting to go out and see Luke hooked up to the ECMO machine and to watch all of his blood going through it to get oxygen.  Thankfully, we got a pleasant surprise.  With the entire ECMO team on hand, all the surgical supplies out by the bedside to cut his arteries and put the tubes into his heart, Luke decided to “start behaving,” as the nurses phrased it.  His blood pressure stabilized, his heart rate came down to normal, and his blood oxygen readings improved.  The pediatric cardiologist laughingly said that Luke just didn’t like him and didn’t want his services.

From that point on, Luke improved tremendously.  The doctors continued the Nitric Oxide, and he was weaned away from everything within a week.  Brian and I finally got to hold him when he was eight days old.  According to hospital policy, he should have been moved to a step down nursery, but those NICU gals decided they liked holding him and decided to keep him right there.  So by the time we brought Luke home, he was very accustomed to being held 24/7 (a practice that we continued, of course!)

Luke had been on numerous prayer chains during his hospital stay.  I have emails from numerous cities, states, and even countries.  Our next hurdle after getting him home was determining just what effects the lack of oxygen had upon his cognitive abilities.  We asked prayer warriors to specifically pray for him in this capacity.  We would have relied upon God’s faithfulness to help us through whatever problems may have been in Luke’s future, but we continued to pray for complete healing.  The doctors had told us to expect a minimum of three years’ worth of visits to the Children’s Hospital of VA in order to assess cognitive deficiencies and how to deal with them.  Well, needless to say, Luke passed all the tests with flying colors and was officially discharged from all future tests when he was 10 months old.  God had truly blessed us with more than we could ever imagine.

When you go through an experience such as this, the last thing you want to think about are the finances of it.  But ultimately the bills will start piling up.  We had three different hospitals, two different ambulance services, and countless specialists, all billing separately.  Just when we thought we were juggling our part of them all (they all totaled around $100,000, so our part was around $20K) successfully, we received devastating news from our insurance company.  Because the Nitric Oxide was an experimental treatment, our insurance company decided not to pay for ANY of the treatment received at MCV.  We were looking at astronomical bills totaling close to $75K.  By some amazing act of God, MCV decided to write Luke off as a “teaching project” and “educational experiment.”  Now, I understand that Nitric Oxide is widely used on infants, covered by insurance, and even available in Lynchburg.  That’s good news, but our experience truly serves as a reminder that God does answer prayer.  God has something special in mind for him, and my prayer for Luke is that he never stop until he discovers what that is.

2 comments:

  1. I cry just as hard reading this as I did when it was actually happening. I've felt and said many times that Luke will be used by God in a mighty way. He's a beautiful child. I just wish I were closer to him and Rachel.

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  2. So moving. So well do I remember the trying times that Luke, Brian, and you had. It was truly a miracle; proof of the power of prayers. think of this often when you related the Tales of Luke and believe that he is a gift from God.

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