Footage courtesy of KLBK 13 Lubbock, TX
Bodie was born June 7th, 2011 with a congenital heart defect called Tetralogy of Fallot. It's a common heart defect that is actually three different defects that occur together: a narrowing of the pulmonary valve, an overriding aorta, and a hole between the two ventricles of the heart. Instead of a normal rhythmic heartbeat, Bodie's heart made a swishing sound.
Surgery to repair the defect is done in infancy and has a 99% survival rate and an excellent prognosis for a healthy life. Without surgery, he would have chronic low blood oxygen resulting stunted growth, poor quality of life and would probably not live past the age of 40, if that long. We took Bodie in to have his surgery on December 6, 2011, one day before his 6 month birthday. The surgery lasted 5 hours. After the surgery, the surgeon told us that the repair went great, his heart was beating well and we would be looking at a normal 1-3 week recovery time while his heart re-learned how to beat.
Three days later at about 3 in the afternoon, Bodie's heart stopped. They performed CPR for about three minutes and got him back. They began to try to figure out the cause. At 8 o'clock that night, Bodie's heart stopped again. This time they performed CPR for almost an hour. While they performed CPR, they hooked him up to an ECMO life support machine. This machine would keep him alive, doing to work of his heart and lungs while they try to determine the cause for his arrests. We were told that infants put on ECMO have a 50% chance of survival. We later learned that the actual figure is around 30-40%.
While he was on ECMO, they determined that there was a blockage in the pulmonary valve. The solution was a Cath-lab procedure to insert a stent to open up the valve. It would mean that he would not have a functional pulmonary valve, but it was a fix to save his life. His pulmonary valve could be repaired later on in childhood. After the stent was inserted, his heart function stabilized. Two and a half days later, we held our breath while they slowly turned down the ECMO machine, letting his own heart and lungs take back over. After beating the odds by coming off ECMO, we began recovery again. He was on a ventilator, retaining fluids and not making much progress, but he kept going. His liver and kidneys had taken a hit during the CPR, so he was on dialysis too.
As we approached Christmas they began to take him off the ventilator for periods of time. He seemed to be doing better. He was off the ventilator Christmas Eve. At two in the morning, Christmas morning, Bodie's heart stopped for a third time. This time it took 45 minutes of CPR to bring him back and get him stable. This time they performed an emergency tracheostomy to help him breathe. A few days later, his heart stopped again at 8 in the morning. It took 4 more minutes of CPR to keep him with us. He began to recover again and things started moving forward. His liver and kidneys were slowly coming back. The fluid was coming off and they were removing drain tubes.
As a result of the CPR on Christmas morning, Bodie's toes had turned black. This is a result of a lack of oxygen to his extremities. We were told not to worry, the toes have a chance of healing, though they may have to surgically remove the tips if they don't fully recover. Bodie's toes did not come back. After two surgeries on his feet, he lost the second toe on his left foot and the tips of the rest of his left toes. Most of his right foot has been amputated leaving him only with a heel pad.
At some point after this Bodie started have seizures. His skin would mottle, his eyes would roll back or pupils pin point, and his limbs would go into stiff, rhythmic jerks. An MRI was done and we were told that the lack of oxygen during CPR had not only affected his toes, but also had caused a fairly significant Anoxic brain injury. His brain had shrunk, leaving space in the subdural area and ventricles. His injured brain was creating fluid which was building up in these areas was causing pressure. The pressure was causing his seizures.
Now they brought in Neurologists and Neurosurgeons. He began getting anti-seizure medications. A drain was inserted into the subdural area allowing the fluid to drain. When the drain was removed, the pressure built back up and the seizures continued.
Next they did a venticularostemy, creating a passage between the ventricles. This should have allowed the fluid to flow from the ventricles to the subdural area where it was hoped would be absorbed by the body. This didn't work either and the seizures continued. Their next step was to insert a shunt. This drained the fluid from the subdural area into the abdomen. This procedure worked well and by the end of February they started talking about sending him to rehab at Baylor Medical in Dallas. All the doctors confirmed that despite his brain injury, with the right rehab, he would be able to walk, talk and go to school. He might have some developmental delays, but he has a good shot at a normal childhood.
Bodie had one last Hurrah for us. One day before he was to be release to rehab, he had his worst seizure ever. It lasted almost 20 minutes. The medication given to bring him out of it dropped his heart rate dangerously low, down into the teens. It was counted as his 5th cardiac arrest. His body went completely flaccid and unresponsive. They almost had to perform CPR for a fifth time. It was determined that there was still fluid pressure in his ventricles. An EVD was inserted in the ventricles to allow the fluid to drain again. It was successful and on March 14th after exactly 100 days in the hospital, Bodie was released to go to Our Children's House Rehab Center at Baylor Medical. He had been to the operating room a total of 14 times.
After 3 weeks in rehab, an infection and agitation issues sent him back to the hospital for a couple weeks at Children's Medical Center in Dallas. That was addressed and he re-entered rehab. The rehab that he has been able to do is going well. He was still being fed through a G-tube and breathing with a Trach, but those should come out in time as he learns to eat and breathe again. The therapists are very positive about his outlook. His response to therapy has been great. We're looking at a few more weeks of rehab before finally being able to bring him home. He is a fighter who's spent his 6th, 7th, 8th, 9th, and 10 month birthdays in the hospital or rehab. Even his heart surgeon used the word "miraculous" to describe his survival.
Coming home: May 3rd...
News clips of a hero's welcome home from Dallas:
The 6 weeks spent in rehab at Our Children's House in Dallas were very promising although in the end he wasn't quite ready. He was on a list of over 20 medications including breathing treatments that were administered virtually every hour day and night. The medications plus his anoxic brain injury caused periods of inconsolable agitation that could last for hours at a time. When agitated, his legs and back would arch and become stiff as a board. His little fists would move in rhythmic jerking motions. Bending his knees would break the arching, but sometimes that took all your strength!
On days when he was able to complete therapy sessions without agitation, he was making excellent progress. He just wasn't able to get the full benefit of rehab until he could get past the agitation phase. The decision was made to send him home.
We brought Bodie home from Dallas on May 3rd. It was the first time he had been home in 150 days. His new nursery looked like a hospital room. He was breathing with a trach and eating and taking all his medications through a G-tube. Steph and I had been trained in trach care which includes suctioning, changing trach ties and swabbing his neck several times a week as well as changing the trach itself once a week. We were also trained in dosing and administering all his meds and feedings through the G-tube. He was still on a schedule that required meds and/or a breathing treatment every hour. His home hospital equipment included a condenser, humidifier, nebulizer, trach suction, oxygen bottles, pulse-ox monitor and feeding pump. Our garage was filling up with boxes of medical supplies that we would need for his care. We had arranged for home health care nursing to help us during the night. At first his agitation was still so bad, that two of his nurses never came back!
We got through our first two weeks at home and went through a gauntlet of follow up Dr. visits. Anytime we left the house with him it took multiple trips to the car. Traveling with Bodie required a portable suction, portable food pump, oxygen bottle, ambu bag with back up trachs and his diaper bag. In a single week he had nine follow up appointments. At each visit, the main question we had was "What medication can we stop?" By the end of the week, we had his med list whittled down to eight. We were starting to see our baby coming back. The agitation was still there, but it was getting better. He was beginning to be more alert and calm for longer periods of time. One thing all his doctors agreed on his how good he looks for a little one that's survived everything he has.
He began outpatient and in-home therapy here in Lubbock. These sessions are going great. The therapists can see a lot of promise. He has a full range of motion and is alert. The only time he shows any stiffness is when he is agitated. He is strong and growing. They'll start teaching him how to eat again.
On June 14th, he had his 16th and final surgery. This surgery was to repair a large hernia that had developed where he had a PD catheter. They also removed his subdural shunt, since it had served its purpose. He recovered in the hospital for more than a week. He has not been on oxygen in several weeks and not had a seizure in several months. The trach was removed about six weeks ago, and after that last stint in the hospital he can concentrate strictly on rehab. He is making more and more progress with therapy and is down to two prescription medications, both for his heart. With a severe anoxic brain injury like his, it's impossible to know how much recovery he will make, EXCEPT he's been doing things all along that he should not be able to do.
It sure does change your perspective on life when you watch a tiny baby fight so hard to keep his.
Article submitted by Bodie's father, Jay Gannaway