Like I stated in part one of Bentley's heart journey, I am not confident in my writing abilities, especially when it comes to more technical writing. But I am going to do my best to explain to the best of my abilities what we have gone through this last couple years with Bentley's heart.
Our Journey to have this surgery has been a rocky one. It took us a little over a year to prepare for this final surgery. Including making sure that Bentleys dental work was done and that he have no cavities or infection. The dental work he had before his first surgery was not done very well. They had drilled really close to one of his nerves in his front tooth, and only did half a root canal on his second... I can't blame them because of the v-fib he had gone into. BUT that did make our life a little more difficult. We had to carefully watch his teeth to make sure that an infection didn't happen. He made it the first six months and was able to have his second surgery. But at our dental clearance appointment for his last surgery they found infection in both of the teeth :( Our dentist and our cardiologist worked out that he could just have his front teeth pulled and he wouldn't have to be put under they could use laughing gas (yay!) Which meant we could do it in the dentist office. So a week before his surgery took place Bentley lost his front two teeth! This happened on May 23.
On Friday May 24, Bentley had his pre-op for his surgery. After a long day at the hospital we got all of our tests done and ready for the following week. It was memorial day weekend so it was nice to have Dad home and Grandma Richards there to play.
His Cardiac Cath was scheduled for Tuesday May 28, and his CT scan Thursday May 30. As we were having his cardiac cath done, the surgeon doing his cath came out to talk to us and informed us That our main surgeon Dr. Hanley had a last minute cancellation and would like to Have Bentleys surgery on the 30. So while Bentley was still under anesthesia from the cath they took him to get his CT scan. Both tests showed that his heart was strong enough and ready for the double switch surgery. So Instead of the June 4 surgery date, we were now on the schedule for May 30. We were so blessed to have Grandma here and we spent Wednesday getting the house ready and playing all day.
We got to the hospital at 6 AM They took him back around 7:30 and Surgery started around 9. It was so hard to leave him. We got updates every 2 hours from the operating team and believe me they were the longest hours I have ever had to endure. When the surgeon was done he came and talked to us saying that everything looked good and they were able to do the entire procedure without any complications! Dr. Hanley did mention that he still had a small leak in one of his valvess but it was small enough that it could heal on its own. But we we would keep a close eye on it just to make sure it didn't turn into a problem. The surgical team finished prepping him and he was out of surgery around 3:30. It was another couple hours until we got to go up and see him.
Following his surgery he was kept sedated for over 48 hours making sure that everything was working properly before they took out his breathing tube. Those were some of the most excruciating days. In those days they were keeping a close watch on his blood pressure, his heart rate and his oxygen. Those days are a blur now, but during that time his stats were all over the place. At one point he spiked a high fever, and were constantly battling to keep his stats in a healthy spot. We were able to wake him up and take out his breathing tube on Sunday June 1. If was a relief to see him awake. But we still had him on high flow oxygen because he wasn't' able to keep his oxygen up on his own. In our following days in the ICU they worked and tweaked his medications to keep his heart rate at a safe speed, keep his blood pressure up, and ween him off his oxygen. By wednesday we were able to leave the ICU and go to the patient care unit. At the patient care unit we still struggled with the dosage of some of his meds, and also helping bentley keep everything down (He gets really anxious when it comes to taking any kind of medicine and will throw everything up). But we found a good balance between medicine disguised as candy and other pills crushed up in his food. As soon as the doctors were happy with how he was healing, we got to go home on Friday June 7! Only a nine day stay when we were expecting and planning on at least a 14 day stay!
At first we thought they would just switch the arteries, but after talking to his surgical team during pre-op we found it was a little more complicated. The name of his procedure was "The hemi-Mustard/bidirectional Glenn atrial switch procedure". When they switched the arteries they also did what was called a glenn procedure. This makes it so when blood from his upper body pumps, it goes through his pulmonary artery to his lungs, picking up oxygen without passing through the heart. This gives his right ventricle a break so it doesnt need to work so hard.
This is a picture of a normal heart
We ultimately chose for Bentley to have this surgery to give him a better life. To avoid heart failure and a heart transplant. So that we can breathe easier. He has no physical restrictions except the limitations for his pacemaker( No contact sports, no strong magnets, etc..). The only future surgeries are to replace his pacemaker battery every 12-15 years. After he has recovered he should be as active and healthy as any other little boy!
Anyway. I know its complicated, and I still don't know if I understand it completely. But I do know that the human body is amazing. It amazes me that this is even possible, it amazes me that there is a level of understanding and knowledge in our day that doctors know what to do. And it amazes me that our 5 year old went through this complicated open heart surgery 4 weeks ago, and this afternoon was playing with his sister like any other 5 year old! I am having a hard time putting into words all the emotions and feelings that I have, and that have occurred throughout our journey with Bentley. But I do know that through it all, Heavenly Father has guided us; to the right place, to the right Doctors and Surgeons, to the right people. He knew exactly what Bentley needed, where he needed to be and what we needed as a family, way before any of us did. I know that there has been divine intervention. Without a doubt I know that!
I also find this quote from President Russel M. Nelson extremely relevant and fitting to Bentley and our family. He said :
Love always
The Richards Family
On Friday May 24, Bentley had his pre-op for his surgery. After a long day at the hospital we got all of our tests done and ready for the following week. It was memorial day weekend so it was nice to have Dad home and Grandma Richards there to play.
His Cardiac Cath was scheduled for Tuesday May 28, and his CT scan Thursday May 30. As we were having his cardiac cath done, the surgeon doing his cath came out to talk to us and informed us That our main surgeon Dr. Hanley had a last minute cancellation and would like to Have Bentleys surgery on the 30. So while Bentley was still under anesthesia from the cath they took him to get his CT scan. Both tests showed that his heart was strong enough and ready for the double switch surgery. So Instead of the June 4 surgery date, we were now on the schedule for May 30. We were so blessed to have Grandma here and we spent Wednesday getting the house ready and playing all day.
We got to the hospital at 6 AM They took him back around 7:30 and Surgery started around 9. It was so hard to leave him. We got updates every 2 hours from the operating team and believe me they were the longest hours I have ever had to endure. When the surgeon was done he came and talked to us saying that everything looked good and they were able to do the entire procedure without any complications! Dr. Hanley did mention that he still had a small leak in one of his valvess but it was small enough that it could heal on its own. But we we would keep a close eye on it just to make sure it didn't turn into a problem. The surgical team finished prepping him and he was out of surgery around 3:30. It was another couple hours until we got to go up and see him.
Following his surgery he was kept sedated for over 48 hours making sure that everything was working properly before they took out his breathing tube. Those were some of the most excruciating days. In those days they were keeping a close watch on his blood pressure, his heart rate and his oxygen. Those days are a blur now, but during that time his stats were all over the place. At one point he spiked a high fever, and were constantly battling to keep his stats in a healthy spot. We were able to wake him up and take out his breathing tube on Sunday June 1. If was a relief to see him awake. But we still had him on high flow oxygen because he wasn't' able to keep his oxygen up on his own. In our following days in the ICU they worked and tweaked his medications to keep his heart rate at a safe speed, keep his blood pressure up, and ween him off his oxygen. By wednesday we were able to leave the ICU and go to the patient care unit. At the patient care unit we still struggled with the dosage of some of his meds, and also helping bentley keep everything down (He gets really anxious when it comes to taking any kind of medicine and will throw everything up). But we found a good balance between medicine disguised as candy and other pills crushed up in his food. As soon as the doctors were happy with how he was healing, we got to go home on Friday June 7! Only a nine day stay when we were expecting and planning on at least a 14 day stay!
At first we thought they would just switch the arteries, but after talking to his surgical team during pre-op we found it was a little more complicated. The name of his procedure was "The hemi-Mustard/bidirectional Glenn atrial switch procedure". When they switched the arteries they also did what was called a glenn procedure. This makes it so when blood from his upper body pumps, it goes through his pulmonary artery to his lungs, picking up oxygen without passing through the heart. This gives his right ventricle a break so it doesnt need to work so hard.
 |
| This is a picture of the completed procedure |
This is a picture of a normal heart
We ultimately chose for Bentley to have this surgery to give him a better life. To avoid heart failure and a heart transplant. So that we can breathe easier. He has no physical restrictions except the limitations for his pacemaker( No contact sports, no strong magnets, etc..). The only future surgeries are to replace his pacemaker battery every 12-15 years. After he has recovered he should be as active and healthy as any other little boy!
Anyway. I know its complicated, and I still don't know if I understand it completely. But I do know that the human body is amazing. It amazes me that this is even possible, it amazes me that there is a level of understanding and knowledge in our day that doctors know what to do. And it amazes me that our 5 year old went through this complicated open heart surgery 4 weeks ago, and this afternoon was playing with his sister like any other 5 year old! I am having a hard time putting into words all the emotions and feelings that I have, and that have occurred throughout our journey with Bentley. But I do know that through it all, Heavenly Father has guided us; to the right place, to the right Doctors and Surgeons, to the right people. He knew exactly what Bentley needed, where he needed to be and what we needed as a family, way before any of us did. I know that there has been divine intervention. Without a doubt I know that!
I also find this quote from President Russel M. Nelson extremely relevant and fitting to Bentley and our family. He said :
The amount of work the heart does is amazing. Each day it pumps enough fluid to fill a 2,000-gallon tank. The work it performs daily is equivalent to lifting a 150-pound man to the top of the Empire State Building, while consuming only about four watts of energy—less than that used by a small light bulb in your home.We still have recovering to do, but we are glad to be doing it at home. We are so grateful for all the love and prayers sent our way. And for all our family and friends that have helped us through this last year. We couldn't have done it without you💗
At the crest of the heart is an electrical generator that transmits energy down special lines, causing myriads of muscle fibers to beat in coordination and in rhythm. This synchrony would be the envy of any orchestra’s conductor. All this power is condensed in the human heart—only about the size of one’s fist, yet energized from within by an endowment from on high.
Love always
The Richards Family
(Side note: our family pictures were taken by our amazing Brother-in-law)
Comments
Post a Comment