So the kids and I were in Nebraska and Oklahoma for almost 3 months! It's was a crazy visit! The kids were sick off and on for about 2 months. Keaton had a cardio appointment in December at Children's in Omaha and things has stayed about the same since his appointment in November which was great news! Alex spent 2 weeks with us over Christmas and headed back to California for his crazy work schedule. The kids had a great Christmas and got more presents than they needed! It was great to visit with family and friends!
Today we had an appointment with Keaton's cardiologist. I was under the impression that if Keaton's heart stayed about the same that no procedures would need to be done. I misunderstood the doctor and was just hoping that nothing was going to need to be done even though we were told 6-12 months for the balloon cath. Well today we were told that in June the procedure will need to be done. He will have an appointment in early May and we will schedule the procedure from there. I had asked the doctor that if his heart stayed the same in May would he still need the procedure and he said yes. Dr.Berdjis said it was a 50/50 option to do it now or wait. He would like to wait so that Keaton can gain weight(he would like him to be about 20 pounds) and the longer we wait the less risky the procedure. I am pretty heart broken. I know it is a pretty minor procedure and the risks are low, but even knowing that doesn't make it any easier. So from now until June we'll be praying that everything goes smoothly!
Thursday, February 14, 2013
Saturday, November 10, 2012
Busy, busy, busy
Well this week has been crazy! Alex was working insane hours(this is really nothing new). I had an appointment on Thursday, along with Keaton's, and the Marine Corps ball! Sorry if this post is a little scatter brained!
Keaton's appointment went well. His aortic stenosis isn't progressing quickly which is great! They do an echo cardiogram at every appointment to check and see how the heart looks. We found out for sure that he has a bicuspid aortic valve meaning he has 2 leaflets rather than 3. They check the gradient which is the pressure across the valve. At his last appointment it was a 40-45 and this appointment it was between 45-50. We were also told that checking his pressures through the ECHO is not exactly accurate. The doctor said depending on where the wand is on his chest it differs, like by his neck it read 60. They also check the thickness and I forgot to ask exactly what that means, but we do know that it is between a 5 and 6. We were told that between 8 and 10 is severe. Dr. Berdjis explained that if he had pulmonary stenosis which is on the other side of the heart they would have treated it already with the gradients that he has. He said it's much easier to treat because they can do the cath through a vein. With aortic stenosis they have to go through an artery in his groin area. So for now we wait and see how it progresses. His next appointment will be in December before Christmas in Omaha and then again in February in California.
I do consider us very lucky in Keaton's case. There are babies born with severe aortic stenosis that need intervention ASAP. There are also other kids that have open heart surgeries or transplants. I would rather our kids be completely healthy, but it could also be much much worse. When he first got diagnosed I was a nervous wreck and reading the worst things on google (not a good idea!!!). I know for sure he will have to have balloon dilation done. I know that sometimes they have issues after that and have regurgitation. I also know he may have to have a valve replacement someday in the future. For now I am just grateful that he is such a happy baby (when teeth aren't coming in!).
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Keaton's appointment went well. His aortic stenosis isn't progressing quickly which is great! They do an echo cardiogram at every appointment to check and see how the heart looks. We found out for sure that he has a bicuspid aortic valve meaning he has 2 leaflets rather than 3. They check the gradient which is the pressure across the valve. At his last appointment it was a 40-45 and this appointment it was between 45-50. We were also told that checking his pressures through the ECHO is not exactly accurate. The doctor said depending on where the wand is on his chest it differs, like by his neck it read 60. They also check the thickness and I forgot to ask exactly what that means, but we do know that it is between a 5 and 6. We were told that between 8 and 10 is severe. Dr. Berdjis explained that if he had pulmonary stenosis which is on the other side of the heart they would have treated it already with the gradients that he has. He said it's much easier to treat because they can do the cath through a vein. With aortic stenosis they have to go through an artery in his groin area. So for now we wait and see how it progresses. His next appointment will be in December before Christmas in Omaha and then again in February in California.
I do consider us very lucky in Keaton's case. There are babies born with severe aortic stenosis that need intervention ASAP. There are also other kids that have open heart surgeries or transplants. I would rather our kids be completely healthy, but it could also be much much worse. When he first got diagnosed I was a nervous wreck and reading the worst things on google (not a good idea!!!). I know for sure he will have to have balloon dilation done. I know that sometimes they have issues after that and have regurgitation. I also know he may have to have a valve replacement someday in the future. For now I am just grateful that he is such a happy baby (when teeth aren't coming in!).
So today we are packing and the kids and I are heading home tomorrow. Alex's schedule has been beyond crazy. One day this week he worked from 4 am to 2:30 am! We thought that his job was going to get easier over time and it has gotten harder on all of us. It's been very lonely for me and difficult to take care of the kids and responsibilities alone. Alex is in cycle now until December 14th and he picks up another cycle January 1st so he won't be here much. He is coming to Omaha for Christmas and then we will be driving back to California in February.
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He's ready to go!
Thursday, October 11, 2012
HOLY COW!
Since Alex is active duty military and we have insurance provided I have never looked much into how much everything we have done costs. I know that I have gotten blood work and they billed $1100, etc. I have always been thankful for the healthcare that we have(more so now that we are seen off base..no offense to anyone).
Adalie and I are on Tricare prime so we don't pay anything out of pocket. The rules changed and Keaton is on standard so he can be seen by a civilian doctor. I just checked to see how much the bill from his recent cardiologist appointment was and they billed $3379.00! I know that the insurance company doesn't pay that much, but WOW! In the real world Alex and I would never be able to afford that! My Mom has told me how much she pays monthly, plus deductibles, and then 80/20 and we probably couldn't manage that either!
Finding out that Keaton has a heart condition has put things into perspective for us. Alex and I have talked about him getting out of the Marine Corps. We have great benefits like insurance and a house we would not be able to afford that is 5 minutes from the beach. But with the good comes the bad. It takes a toll on our family and it's a hard and stressful life to live. I am lonely most days and miss our families a lot! It's been hard to make real friends and we don't live by the classiest people.
The reality now is that Keaton will need to be seen on a regular basis and it's not cheap! There is no guarantee of a job if Alex gets out and no promise of insurance. We have a couple of years to figure it out, but it's scary. I hope things will get easier as we go and maybe I can worry less about all of this!
Adalie and I are on Tricare prime so we don't pay anything out of pocket. The rules changed and Keaton is on standard so he can be seen by a civilian doctor. I just checked to see how much the bill from his recent cardiologist appointment was and they billed $3379.00! I know that the insurance company doesn't pay that much, but WOW! In the real world Alex and I would never be able to afford that! My Mom has told me how much she pays monthly, plus deductibles, and then 80/20 and we probably couldn't manage that either!
Finding out that Keaton has a heart condition has put things into perspective for us. Alex and I have talked about him getting out of the Marine Corps. We have great benefits like insurance and a house we would not be able to afford that is 5 minutes from the beach. But with the good comes the bad. It takes a toll on our family and it's a hard and stressful life to live. I am lonely most days and miss our families a lot! It's been hard to make real friends and we don't live by the classiest people.
The reality now is that Keaton will need to be seen on a regular basis and it's not cheap! There is no guarantee of a job if Alex gets out and no promise of insurance. We have a couple of years to figure it out, but it's scary. I hope things will get easier as we go and maybe I can worry less about all of this!
Crazy Town!
I am now considering myself a little bit kooky or what I usually call people crazy town. Since finding out about Keaton every little sound or cough I check on him. When he is sleeping for longer than 20 or 30 minutes I have the urge to just go peek, but I don't because I know it will wake him up. I joked with my friend and said that when someone comes to my door I will answer with hand sanitizer and check their nose for snot! I don't actually plan on it, but you never know!
My entire life I have been a worrier. I could never make myself stop and there was always something on my mind to worry about. As an adult I would like to think I worry about more important things than I did when I was a teenager, but it's still not a good thing. I was always told that worrying won't change the outcome and I know that, but it still hasn't changed it for me. I know it is a choice, but I don't know how to turn it off. Now that I know Keaton has a heart problem it consumes my thoughts and worries. I hope at some point it will get easier!
On a better note Keaton had his first real food today...homemade organic squash! At first he liked it, but after a few bites he was shaking his head and making funny faces! Adalie wanted to be included in eating baby food so she had some too!
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This was written in September, but I forgot to post it!
My entire life I have been a worrier. I could never make myself stop and there was always something on my mind to worry about. As an adult I would like to think I worry about more important things than I did when I was a teenager, but it's still not a good thing. I was always told that worrying won't change the outcome and I know that, but it still hasn't changed it for me. I know it is a choice, but I don't know how to turn it off. Now that I know Keaton has a heart problem it consumes my thoughts and worries. I hope at some point it will get easier!
On a better note Keaton had his first real food today...homemade organic squash! At first he liked it, but after a few bites he was shaking his head and making funny faces! Adalie wanted to be included in eating baby food so she had some too!
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Wednesday, September 26, 2012
Not what we were expecting
Today (I wrote this on the 24th but didn't post it until today!) was a very stressful and hard day, one that I wish I could redo. I have wanted to start a blog for a while and today has made me finally do it(plus I can't sleep!).
But first there is some information that needs to be explained. Keaton was born very healthy and beautiful on March 10, 2012. There was no sign of any abnormalities or problems and no issues throughout the whole pregnancy. A couple weeks later at his appointment with Dr. Sears we were told he had a heart murmur, but not to worry! He would need an echocardiogram just to be safe. So on April 13 we took the little man to have this easy procedure done. Dr. Sears got back to us and the results were normal! Thank God! We assumed we were in the clear!
Fast forward to his 6 month check up on September 10. The doctor checked the normal stuff. His weight is in the low percentile, but that is not uncommon for Prososki children! He looks healthy, he's always smiling, and doing great developmentally. He was listening to his heart and said that the murmur had gotten louder. He then checked his pulse which was faster than it should have been. He put in a referral to see a pediatric cardiologist. We called and got the appointment for September 24.
So today, September 24, didn't start out the best. I had red, goopy eyes when I woke up. I knew we had Keaton's appointment at 11:20 about a half hour away. So I called my doctor, got in at 9:45, and knew we had to be headed to Keaton's appointment by 10:30AM. We waited for my doctor for 45 minutes and told them we had to go. The doc looked at me and said she would send a prescription. So we were on our way to the cardiologist. Keaton had quite the grumpy look on his face on the way there.
I liked the office as soon as I walked in. They had a dog roaming the office which was nice! Dr. Berdjis talked with us and got some history on Keaton. He listened to his heart and took his pulse. He believed that it was his something valve..not quite sure. We went in to have the echocardiogram. The tech was great! He joked with us and explained some of what he was seeing. He noticed that the issue was with his aortic valve. After he was done with the echo we had to go back to see the doctor. He explained to us that Keaton has aortic stenosis. The aortic valve is thick and the left side of his heart has to work harder to pump the blood. If untreated it can lead to scar tissue in the heart. We were told that he will have to probably have a balloon catheterization in 6 to 12 months to open up the valve. The long term is unknown which is probably the hardest part for me. There is no guessing what might or might not happen. Each case is unique! If Keaton gets sick at all he is at a higher risk so we have to keep a close eye on him! His next appointment is in 2 months to check and see how everything is going..and then decisions are made from there.
So that left us with a very crappy day, but it got even better!
We ordered pizza for dinner and thought that we would relax after an emotional day. Adalie was complaining of a stomach ache at dinner, but we thought she was saying that so she could have dessert later without eating dinner. Turns out she wasn't lying. At the dinner table she got up because her stomach hurt and threw up all over the floor! I don't do puke so thankfully my husband and in-laws were here to help!
The whole situation makes me very thankful for great doctors! I think I am going to be a nervous wreck until his next appointment! It's hard not to think of the struggles that Keaton may have to go through. Possible surgeries or even open heart surgeries, but we'll have to wait and see! I think this diagnosis has made our family more thankful for what we do have!
But first there is some information that needs to be explained. Keaton was born very healthy and beautiful on March 10, 2012. There was no sign of any abnormalities or problems and no issues throughout the whole pregnancy. A couple weeks later at his appointment with Dr. Sears we were told he had a heart murmur, but not to worry! He would need an echocardiogram just to be safe. So on April 13 we took the little man to have this easy procedure done. Dr. Sears got back to us and the results were normal! Thank God! We assumed we were in the clear!
Fast forward to his 6 month check up on September 10. The doctor checked the normal stuff. His weight is in the low percentile, but that is not uncommon for Prososki children! He looks healthy, he's always smiling, and doing great developmentally. He was listening to his heart and said that the murmur had gotten louder. He then checked his pulse which was faster than it should have been. He put in a referral to see a pediatric cardiologist. We called and got the appointment for September 24.
So today, September 24, didn't start out the best. I had red, goopy eyes when I woke up. I knew we had Keaton's appointment at 11:20 about a half hour away. So I called my doctor, got in at 9:45, and knew we had to be headed to Keaton's appointment by 10:30AM. We waited for my doctor for 45 minutes and told them we had to go. The doc looked at me and said she would send a prescription. So we were on our way to the cardiologist. Keaton had quite the grumpy look on his face on the way there.
So that left us with a very crappy day, but it got even better!
We ordered pizza for dinner and thought that we would relax after an emotional day. Adalie was complaining of a stomach ache at dinner, but we thought she was saying that so she could have dessert later without eating dinner. Turns out she wasn't lying. At the dinner table she got up because her stomach hurt and threw up all over the floor! I don't do puke so thankfully my husband and in-laws were here to help!
The whole situation makes me very thankful for great doctors! I think I am going to be a nervous wreck until his next appointment! It's hard not to think of the struggles that Keaton may have to go through. Possible surgeries or even open heart surgeries, but we'll have to wait and see! I think this diagnosis has made our family more thankful for what we do have!
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