Friday, September 12, 2008

Gaberiel's Story

Gaberiel Daniel Riley, was born on the 18th day of July 2008, to Daniel and Jennifer Riley at 11:11am in London at the Children's Hospital of Western Ontario. Mom had attended a regular scheduled appointment and a simple rise in her blood pressure had the doctor admitting her to hospital. Jennifer laboured an amazing 11 plus hours without any form of drugs. Jennifer always maintained that her parents insisted that she not use drugs. I think her dad tried to explain the difference between good drugs and bad drugs but after all was said and done she was a hero to many. Gaberiel weighed an astounding 9lbs, 1ounce and the nurses seemed surprised. Laughter filled the room as it was explained that his older sister Danielle weighed in at 10lbs, 2 ounces and his brother Michael weighed in at 7lbs, 10ounces so baby Gaberiel landed right in the middle of his siblings. It was explained that they were all little compared to their father who weighed in over 12lbs when he was born at Victoria Hospital on south street in London. The doctor's cut the cord and he basically rolled out onto the floor walked out onto South Street and went for an icecream.

In the few moments after Gaberiel was born dad cut the cord and after he was wrapped he was placed on mom's chest. Gaberiel seemed congested and mom was immediately concerned about his coloring. Gaberiel was taken to a heat table and cleaned up for his initial examination. During his examination he was suctioned for an extensive period of time and they joked he swollowed a small lake. After 40 minutes of still extracting fluid from his lungs they called for another team of doctors and indicated they could hear a heart murmur. Gaberiel was rushed to the Pedatric Critical Care Unit where Daniel and Jennifer were told by doctors that they couldn't guarntee that Gaberiel would make it through the night. It was believed that Gaberiel may have Menigitis and be needing a spinal tap. On entering the Unit Gaberiel was hooked up to an ECG and on lung support and oxygen as he lay in an incubator. The nurse noted that his blood pressure leveled out and that he stablized when he heard his parents. The nurse furthered to explain that in his almost 30 years of nursing, he knew that no medicine of this day could save their son's life and that through experience he suggested that they talk to him and that he couldn't guarntee it but he stated he would be recovering by morning. Mom and Dad sat vigilant with Gaberiel through the night and talked to him all about Team Riley and the things we do as a family and how much they would like to take him to Disneyland. (Its rumoured that a lot of magical things take place there).

Early the next morning tired and still crying with the belief their baby was dying. Daniel and Jennifer were amazed that Gaberiel began to breathe on his own and was removed from the oxygen and moved to the pedatric care unit on the 7th floor. Gaberiel was subjected to an echocardiogram of his heart and several blood and sugar tests. The early diagnosis was an enlarged heart called by medical name Hypertrophic Cardiomyopathy and it was believed that mom may have undiagnosed diabetes. Not the case. After meeting doctors and several blood tests later it was determined that the doctors really didn't know what was causing this condition. Gaberiel remained in hospital for 6 days following his birth and after being roomed with other infants born with illicit drug addictions and constant crying mom demanded a meeting with doctors.

Gaberiel's parents had watched as the heart monitors went off and there were delays in response to the crib sides and believed they could better care for their child at home. Gaberiel at this point was on Propanol and his mom and dad providing his care. Gaberiel was discharged and was to follow up in one months time.

Gaberiel was taken to Childrens Hospital in London and after an ECHO examination of his heart it was determined that doctors in London knew that they did not know the cause and that his heart was still growing. An appointment was made at Sick Kids in Toronto and it was indicated that they would operate and remove the muscle around the lower portion of his heart.

On the 26th day of August 2008 Gaberiel was brought to Sick Kids in Toronto and it was a matter of 4 hours before Dr. Benson indicated that there was no reasonable possibility that they could successfully operate and remove muscle from Gaberiel's heart and that it would likely grow back if they could not determine what was causing it to grow. Doctors could only speculate and ordered all his tests from London Hospital and began his own work ups and testing. It was determined that Gaberiel's condition was a terminal illness and the only means to give him a reasonable chance at life was through a heart transplant.
On the 8th day of September, at approximatly 1AM, Gaberiel revieced his new lease on life. Gaberiel came out of surgery that morning very stable and his condition very, very promising. Although Gaberiel came out of surgery stable, the Dr's re-visited the risks and various things Mom and Dad needed to watch... much to everyones amazement, he was breathing with a respirator but not a heart and lung pump (life support).
At 3pm that day they met with the Surgical Team who advised them that Gaberiel was rejecting the heart and that after moving dosages of medications they were unable to get the heart to correct it's self and were facing the difficult task of having to start the life support. They indicated they needed to open his chest cavity again and begin the heart and lung pumps to regulate his heart rate with the assistance of a pace maker. The life support system is used to give his heart a rest and to give them an opportunity to work on the heart. The chest cavity is left open to assist with the swelling of the heart so that proper drainage could occur. They indicate that they would give the heart anti-rejection drugs to possibly correct the problem. They indicate that over the next 4-5 days they will medicate the heart and slowly re-introduce the heart to its functional responsibility to the body and gradually turn down the life support until the heart can operate on its own again. They indicate that this is not uncommon to transplants as initially the heart gets going and starts doing an excellent function and then eventually produces antibodies that begin to reject the donor heart.

After two days on support, Dan and Jen arrived at the hospital and found that the doctors had decided to take Gaberiel off of Ecmo a day early. What a wonderful thing to hear. He is now off the support and his first set of blood work is good. He of course is still very sick and this will be touch and go, minute by minute. But for now, his chest is still open so if something goes for the worse it will be easier to hook the ecmo back up. The doctors were genuinely amazed at his progress as he has taken on the heart, but he's still on the ventilator. They state that the heart muscle is squeezing through the blood to his body under Gaberiel's own power - unassisted. The heart rate is 140 and normal for a little boy. His previous heart rate was 120. The ventilator is to assist Gaberiel's lungs so they can slowly reduce some medications and at this point they are astound at the rate he is taking it on again but are going to be cautious and go at a medical pace.
Mom and Dad were advised not to get to far ahead of themselves, being as he is a very long way from the finish line. Think of it as being lap 2 out of 20.
On the 11th day of September, the transplant doctors surgically closed his chest. It was expected that within 2 hours Gaberiel may start swelling again and bleeding fluid around the heart. There is a usual pattern that is not uncommon to take 1 step forward and 2 steps back, but that never happened this day. The doctors continue to warn us not to get to far ahead as things tend to change very quickly and without warning. To this point they are a little surprised at him.
The next step is to start reducing the muscle relaxants and to see Gaberiel start to wake up. He will still be on some pretty serious drugs but by the end of the day they want to see how the heart reacts to taking on muscle movement and as it takes on more they will slowly turn down the respirator and see how much he will take on. They say that this phase is all controlled by computers and that if theres any signs of the heart tiring that the computer kicks the respirator back up a notch and that takes the work of his lungs and doesn't overload the heart so much. Baby steps.


This only just a part of Baby G's story.

The other half of this is, Gaberiel is not an only child, he has 2 older siblings ages 1 and 2, who have been staying with family in London, a city that is 2.5 hours away from where Mom and Dad are with Baby G. Further more, being as he has had a heart transplant Dan & Jen were advised that they needed to move to Toronto for up to a year after this transplant. The first three months will be daily appointments on demand and then after that, the will have up to 2 apts weekly on demand. At this time finding a place has been very difficult for them. Rent is not lookin cheap and nothing seems close enough. Then to top off the cake Dad works as a police officer on the other side of London and will have to leave Mom and Baby G to head back to support the family.

Dan and Jen have truley been a great inspiration to many, there love for one another and there family is beyond amazing. They have really taken this experiance and became stronger as team Riley.

Please join us all in prayer and pray that God's hand is all over this. As easy as it is said for us, pray that Dan and Jen will wholy give there baby boy up to God and let His healing hands do the work, as well as provide a roof over their heads.