TRIALS
We have been preparing for over 4 years for this trial. But nothing, no matter how much you knew it could and most likely would happen, can prepare you when your son's doctor tells you now is the time. "Your son needs open heart surgery."
August 24th, 2005, Jason was born in Las Vegas, NV. He was perfect and healthy looking in every way. At his 2 week check up the doctor heard a heart murmur and recommended I take him to the cardiologist. I mentioned that I was flying out to WA in a few days and so I'd probably go when I got back, 3 weeks later. The cardiologist doctor called me the next day after visiting with the pediatrician, asking me to go in to have Jason checked out. It was late and he was willing to stay after hours for us to get there. After an ultra sound of his heart (echo) the cardiologist diagnosed Jason with a very small hole in his heart. Nothing that needed to be fixed right away, unless it started causing problems. So Jason started going every 3 months, then it turned to every 6 months and then just once a year to having an echo done to make sure that the hole wasn't affecting anything. He has been to 3 different cardiologists with us moving. Las Vegas, Seattle and here in SLC. He has been going to this cardiologist for almost 3 years. So the longest of the 3 doctors.
Today was another routine echo. I left the same time Cameron went to school and dropped off the girls at my neighbors home. My neighbors have been great and always willing to watch my kids during doctor appts. Which have been a lot more regular lately. The echo was at 9 am at Primary Children's Medical Center. During the echo Jason watched Ice Age. The ultra sound lasted the whole movie. A year ago he watched Madagascar during his echo and it lasted the whole time also. Jason is battling a cold and I am pretty sure he has allergies on top of that. So laying down doesn't do to well when you are congested. I was constantly wiping his nose. And he just was super antsy. When the echo tech was done he took the readings to show the cardiologist. About 20 minutes later they both came back and the cardiologist looked again at Jason's heart on the monitor. By this time Jason was ready to be done. I don't blame him. We then waited to hear the results from the doctor, as usual.
The first thing the cardiologist doctor said was "well, you probably know something isn't right if the cardiologist came to take a look at the echo." I really didn't think it was that big of a deal. I just thought that the tech was having a hard time getting a good look at Jason's heart because he was moving so much.
Apparently Jason has muscle bundles developing in the right side of the heart, which is making it hard for the blood to flow. It is a common cause from the hole. But it's something that won't go away, but just get worse. So, they need to go in, take out the muscle bundles and repair the hole. Half day of surgery, 5 days in the hospital.
I did pretty well with talking to the doctor. It was when I got out and called David that I lost it. It was lunch time, so I met him at his work and we took Jason out to McDonald's for a happy meal and ice cream. Of course Jason knew nothing of the tears from me. He got some fun toys at the appointment and a new fleece blanket that was donated that he laid on during the echo that kept him pretty preoccupied, which I was grateful for.
David took off the rest of the day. Jason rode home with him in his truck, which the kids just love. I went and picked up Alyssa at the neighbors. Melanie was already at afternoon kindergarten. When Alyssa ran up to me and gave me a big hug I just started crying again. Times like this makes you hug and kiss your kids a little more. David and Jason went down to the motorcycle shop. I think David thought Jason would like that. While they were gone I set up an allergy appt. for Jason, hopefully to get some answers, and called the insurance to see how much is covered for open heart surgery. Not that it will make our decision, it's just something to help plan for.
My tears came quickly. David did good until he talked to the first person about it over the phone, that wasn't a doctor. He lost it while talking to his friend, Sandy. I think he was being strong for me.
Now is the question of when. The cardiologist recommended within the next 3 months. One major thing coming up, a new baby. So, do we do it in December and try to get it in before the year is over and a new calendar year for insurance rolls over? And do it so I can give my full attention to Jason? Or do we wait until after the baby is born? It's something to pray about. It just breaks my heart to think that my little "Ja-Ja" will be having his chest cut open. Very scary.
Of course I can't help but think of the worst that could happen. I don't know if I could do that. I must have been dreaming of it all last night because I woke up crying and couldn't go back to sleep for a long time. David tried to comfort me. It's the middle of the night when you can't keep your mind preoccupied with the kids and household duties and think of other things that's hard. Yesterday was emotionally draining for us. I feel like this will be a long road.
August 24th, 2005, Jason was born in Las Vegas, NV. He was perfect and healthy looking in every way. At his 2 week check up the doctor heard a heart murmur and recommended I take him to the cardiologist. I mentioned that I was flying out to WA in a few days and so I'd probably go when I got back, 3 weeks later. The cardiologist doctor called me the next day after visiting with the pediatrician, asking me to go in to have Jason checked out. It was late and he was willing to stay after hours for us to get there. After an ultra sound of his heart (echo) the cardiologist diagnosed Jason with a very small hole in his heart. Nothing that needed to be fixed right away, unless it started causing problems. So Jason started going every 3 months, then it turned to every 6 months and then just once a year to having an echo done to make sure that the hole wasn't affecting anything. He has been to 3 different cardiologists with us moving. Las Vegas, Seattle and here in SLC. He has been going to this cardiologist for almost 3 years. So the longest of the 3 doctors.
Today was another routine echo. I left the same time Cameron went to school and dropped off the girls at my neighbors home. My neighbors have been great and always willing to watch my kids during doctor appts. Which have been a lot more regular lately. The echo was at 9 am at Primary Children's Medical Center. During the echo Jason watched Ice Age. The ultra sound lasted the whole movie. A year ago he watched Madagascar during his echo and it lasted the whole time also. Jason is battling a cold and I am pretty sure he has allergies on top of that. So laying down doesn't do to well when you are congested. I was constantly wiping his nose. And he just was super antsy. When the echo tech was done he took the readings to show the cardiologist. About 20 minutes later they both came back and the cardiologist looked again at Jason's heart on the monitor. By this time Jason was ready to be done. I don't blame him. We then waited to hear the results from the doctor, as usual.
The first thing the cardiologist doctor said was "well, you probably know something isn't right if the cardiologist came to take a look at the echo." I really didn't think it was that big of a deal. I just thought that the tech was having a hard time getting a good look at Jason's heart because he was moving so much.
Apparently Jason has muscle bundles developing in the right side of the heart, which is making it hard for the blood to flow. It is a common cause from the hole. But it's something that won't go away, but just get worse. So, they need to go in, take out the muscle bundles and repair the hole. Half day of surgery, 5 days in the hospital.
I did pretty well with talking to the doctor. It was when I got out and called David that I lost it. It was lunch time, so I met him at his work and we took Jason out to McDonald's for a happy meal and ice cream. Of course Jason knew nothing of the tears from me. He got some fun toys at the appointment and a new fleece blanket that was donated that he laid on during the echo that kept him pretty preoccupied, which I was grateful for.
David took off the rest of the day. Jason rode home with him in his truck, which the kids just love. I went and picked up Alyssa at the neighbors. Melanie was already at afternoon kindergarten. When Alyssa ran up to me and gave me a big hug I just started crying again. Times like this makes you hug and kiss your kids a little more. David and Jason went down to the motorcycle shop. I think David thought Jason would like that. While they were gone I set up an allergy appt. for Jason, hopefully to get some answers, and called the insurance to see how much is covered for open heart surgery. Not that it will make our decision, it's just something to help plan for.
My tears came quickly. David did good until he talked to the first person about it over the phone, that wasn't a doctor. He lost it while talking to his friend, Sandy. I think he was being strong for me.
Now is the question of when. The cardiologist recommended within the next 3 months. One major thing coming up, a new baby. So, do we do it in December and try to get it in before the year is over and a new calendar year for insurance rolls over? And do it so I can give my full attention to Jason? Or do we wait until after the baby is born? It's something to pray about. It just breaks my heart to think that my little "Ja-Ja" will be having his chest cut open. Very scary.
Of course I can't help but think of the worst that could happen. I don't know if I could do that. I must have been dreaming of it all last night because I woke up crying and couldn't go back to sleep for a long time. David tried to comfort me. It's the middle of the night when you can't keep your mind preoccupied with the kids and household duties and think of other things that's hard. Yesterday was emotionally draining for us. I feel like this will be a long road.
Comments
We can't even imagine the emotions that go along with such a trial. You are stronger that I would be! We are willing to do anything and everything for your family. Please let us know any updates. You will be in our prayers!
Natalie and Brauch Sandall