Mateo had his routine check up with the cardiologist yesterday. We asked for prayers and a lot of people have asked how his visit with his doctor went so I wanted to update everyone. Prayers have been answered in a positive way! Mateo had an echo (basically an ultrasound of his heart) as well as a couple of other tests. We spoke to his cardiologist and she gave us the most positive and the highest compliments about his health that we could have hoped for. Mateo's heart is doing SO well. For those that aren't very familiar in the way of medical terminology, please bear with me for a minute. All that's really important out of this is that its good news :)
Mateo's heart function is good. No. Its better than good. Its fantastic. He has slight tricuspid valve regurgitation but nothing that is detrimental or needs to be interfered with. His ASD is wide open. No venous congestion. Low pressures and flow from top to bottom. Everything just looks really, really good! Folks...his O2 saturation was 99-100%..!!!!!! This is very rare for a Fontan anatomy (just referring to the non-normal physiology that Mateo now has due to all his surgeries and the manipulation of his circulation). The nurse kept checking and rechecking the pulse ox and thought it wasn't working right so she used a different one which read the same. His cardiologist is very pleased. She said that as far as HLHS patients go, Mateo has one of the best physiological outcomes and tolerance of the Fontan anatomy that she has seen. We were able to discontinue one of his medications, leaving him only on two meds a day.
We have come so far. Mateo has come so far. His O2 sats used to sit at barely 65%. He used to have a feeding tube that had been surgically placed through his stomach. He was in physical therapy, speech therapy and feeding therapy. At one time, Mateo was taking 7+ meds, several times a day. Out of the children born with this heart defect, only 50% make it to 5 years of age. ONLY 50%.
So Mateo is doing fantastic. But. There's always a "but" isn't there? The "but" is...we have lots of hope for the future, but lots to be concerned about as well. Mateo's anatomy has been altered and with that, there are consequences. His body does not work naturally the way its supposed to and it has been manipulated which means there are consequences. Its true that there are not a lot of long-term statistics. The oldest person alive with similarities to Mateo's condition is only in his early 30s. But more and more children born with heart defects are living longer. This is creating a demand for research. A demand to raise those statistics. A need to find better ways of treatment to help eliminate the side affects of this manipulated anatomy. Mateo has had the 3 stages of "corrective" surgery. But these surgeries are not perfect. I have said this before and will say it again....he is not cured. These surgeries are palliative. They don't fix his heart, they don't cure him of his defect and they are temporary. These surgeries buy us precious time. They give Mateo a chance to live a somewhat normal childhood. To hopefully grow into adulthood.
But there are side affects to the Fontan anatomy. One of those side affects is how it affects the liver. Many of these children are growing up to have liver problems later on. Liver fibroses, liver congestion, liver failure. And according to Mateo's cardiologist...this is not an issue of if it happens...its when. So of course early detection is key. For his hospital, it has become routine to follow the liver and its function beginning at the age of 8 years old.
Fontan anatomy can also bring about PLE or protein losing enteropathy which is a whole host of bad news. If interested, you can find out more about PLE here.
Long-term, the Fontan can bring about vein issues like Chronic Venous Insufficiency and DVT.
But knowledge is power. As more and more children born with a CHD are becoming adults, the experts are finding out the problems with the Fontan and trying to tweak and correct and change the outcomes. Mateo is past the point for a lot of the changes that have been made and much of the new and up and coming advances in the surgeries. His role in this is to be a pioneer in this heart world. But he is thriving. God has been so good to him and to us. God has shown us so much mercy in this CHD world...because it can be so very scary. So ugly. And we thank everyone that has sent up a prayer on our behalf. While we give the glory to God, we couldn't have done it without all of you. Your thoughts and prayers have carried us through so many of the dark moments. For now we are on the other side of all of this....having reached that light at the end of the tunnel...if only for a moment...we will enjoy it. The worries about tomorrow can certainly wait. We have a lot of life to live while we have it and we are choosing to push aside fear and instead....we're enjoying every moment.
Friday, November 8, 2013
Sunday, July 21, 2013
So here we are again, nearly a year since my last post. Ugh. I'm REALLY bad at this whole blogging thing! But as the saying goes, no news is good news. Life has been too normal to really write about any of it. I doubt y'all want to know how much laundry I do or how many bathrooms I clean in a given day....but the last couple of months my fingers have been itching. I'm not even sure what it is I want to get out on "paper" but my fingers are wanting to dance across the keyboard. So here I am.
A lot really has changed since I last wrote anything. All normal every-day things, but life has changed again. We no longer live in Florida. We have moved to the Midwest...and I must say we are really enjoying it. After being in Florida for 8 years (going on 9!) I had gotten used to the palm trees, balmy (ha! HUMID) summer (that is February through November) days and the strange wildlife. I kind of forgot what life in the Midwest was like. I grew up in central Wisconsin and lived there until I was 22 but after being in Florida for so long, my blood definitely has thinned out. I never liked the winter months while living in Wisconsin but now I'm REALLY a big wimp when it comes to colder temperatures. So we moved to Nebraska at just the right time. We missed the long winter and came in April. We've been enjoying the cool, crisp mornings and the hot (less humid) days. Mateo loves all the lightening bugs and begs us to let him run outside and catch them. The air just seems...cleaner...up here for some reason. And while there are no palm trees, there are evergreens! And of course plenty of corn!
We really like the base here and the area we live in. Everyone is very friendly, Mel enjoys his job. We've made quite a few friends at the church we now attend. We're making a life here. I've been able to drive out to see my parents already...now that its a much shorter drive. Mateo spent a week there on his own this past month. He loves it at my mom and dad's place....but it seems he likes it better when we are there. He really missed his dad and me and Mason.
Mateo is doing well. He will start Kindergarten in the fall. I'm sure I'll have a heavy heart as I drop him off. Its bittersweet. Its so fun to start him off on new adventures and see him grow to be healthy, strong and so smart! But its all coming too fast. I hate how fast time flies. I barely get time to enjoy "the now" because before I know it, it has become part of yesterday.
But we found a great Christian school that we enrolled Mateo in this summer and he starts mid-August. I'm very excited about this school. When we first moved here, we thought we'd have Mateo go to public school. This past June, Mateo attended a 3 week summer school program at the public school in our area. It was a way to get Mateo used to the all-day school schedule and to become familiar with the school itself. It was also a way for me to decide what I thought of the public school system here. I realized that it was nice, but not for us. Most of this decision was based on the fact that Mateo has a complex heart defect. I wasn't happy with how things were handled and that prompted us to look elsewhere for his schooling. We came across the Christian school, did an interview and asked several questions, took a tour and decided we loved it. I will be sitting down with the school nurse soon to write up a plan for how things will be handled if specific situations were to come up with Mateo's health. They seem to take it very seriously but at the same time realize that its not what defines him. He is to be treated normal like every other boy out there unless the situation calls for intervention.
We have also had a cardiology appointment since coming here. Yeah...I had that scheduled before we even left Florida. I was able to have Mateo see his regular card in Florida before we left. ALL IS WELL...heart-wise, anyway. We got a great report. And then we saw his new cardiologist once we arrived in Nebraska. The Children's hospital in Omaha is amazing! I felt like I was around people who knew Mateo's condition well. We had a good visit with his new card and I left feeling confident in her medical knowledge and in the way she handles HLHS patients. He will see her again in November for a full work-up. I'm nervous, but not sure why. I think his heart is doing just fine, but I'm worried something else is going on. He's been having a lot of aches and pains lately. Several headaches and leg pain......I keep telling myself its growing pains but I can't help but worry its more serious than that......but I pray that its nothing that can't be taken care of.
Mason is doing well too. Both the boys have adjusted well to this move. I think we're just all happy to be back together as a family again. Mason keeps us laughing all day long. He copies everything Mateo does. He understands just about everything we say to him even though he's not talking much yet. He has a bit of a temper but he has such a loveable, cuddly side as well. He loves to yell and laugh and be dirty....he's just an all-around little boy with a huge personality. He loves people and has to wave and say "hi" to every stranger we pass. He is a joy. Mateo is a joy. They make being a mom pretty darn easy.
So all-in-all....again, we feel the good LORD has placed us where we need to be. Things have once again just fallen into place. We found a beautiful home to rent....I love this house!.....Mel enjoys his job, we found a great school and a great hospital with a wonderful team of doctors and pediatric dentists....life is good. God is good!
A lot really has changed since I last wrote anything. All normal every-day things, but life has changed again. We no longer live in Florida. We have moved to the Midwest...and I must say we are really enjoying it. After being in Florida for 8 years (going on 9!) I had gotten used to the palm trees, balmy (ha! HUMID) summer (that is February through November) days and the strange wildlife. I kind of forgot what life in the Midwest was like. I grew up in central Wisconsin and lived there until I was 22 but after being in Florida for so long, my blood definitely has thinned out. I never liked the winter months while living in Wisconsin but now I'm REALLY a big wimp when it comes to colder temperatures. So we moved to Nebraska at just the right time. We missed the long winter and came in April. We've been enjoying the cool, crisp mornings and the hot (less humid) days. Mateo loves all the lightening bugs and begs us to let him run outside and catch them. The air just seems...cleaner...up here for some reason. And while there are no palm trees, there are evergreens! And of course plenty of corn!
We really like the base here and the area we live in. Everyone is very friendly, Mel enjoys his job. We've made quite a few friends at the church we now attend. We're making a life here. I've been able to drive out to see my parents already...now that its a much shorter drive. Mateo spent a week there on his own this past month. He loves it at my mom and dad's place....but it seems he likes it better when we are there. He really missed his dad and me and Mason.
Mateo is doing well. He will start Kindergarten in the fall. I'm sure I'll have a heavy heart as I drop him off. Its bittersweet. Its so fun to start him off on new adventures and see him grow to be healthy, strong and so smart! But its all coming too fast. I hate how fast time flies. I barely get time to enjoy "the now" because before I know it, it has become part of yesterday.
But we found a great Christian school that we enrolled Mateo in this summer and he starts mid-August. I'm very excited about this school. When we first moved here, we thought we'd have Mateo go to public school. This past June, Mateo attended a 3 week summer school program at the public school in our area. It was a way to get Mateo used to the all-day school schedule and to become familiar with the school itself. It was also a way for me to decide what I thought of the public school system here. I realized that it was nice, but not for us. Most of this decision was based on the fact that Mateo has a complex heart defect. I wasn't happy with how things were handled and that prompted us to look elsewhere for his schooling. We came across the Christian school, did an interview and asked several questions, took a tour and decided we loved it. I will be sitting down with the school nurse soon to write up a plan for how things will be handled if specific situations were to come up with Mateo's health. They seem to take it very seriously but at the same time realize that its not what defines him. He is to be treated normal like every other boy out there unless the situation calls for intervention.
We have also had a cardiology appointment since coming here. Yeah...I had that scheduled before we even left Florida. I was able to have Mateo see his regular card in Florida before we left. ALL IS WELL...heart-wise, anyway. We got a great report. And then we saw his new cardiologist once we arrived in Nebraska. The Children's hospital in Omaha is amazing! I felt like I was around people who knew Mateo's condition well. We had a good visit with his new card and I left feeling confident in her medical knowledge and in the way she handles HLHS patients. He will see her again in November for a full work-up. I'm nervous, but not sure why. I think his heart is doing just fine, but I'm worried something else is going on. He's been having a lot of aches and pains lately. Several headaches and leg pain......I keep telling myself its growing pains but I can't help but worry its more serious than that......but I pray that its nothing that can't be taken care of.
Mason is doing well too. Both the boys have adjusted well to this move. I think we're just all happy to be back together as a family again. Mason keeps us laughing all day long. He copies everything Mateo does. He understands just about everything we say to him even though he's not talking much yet. He has a bit of a temper but he has such a loveable, cuddly side as well. He loves to yell and laugh and be dirty....he's just an all-around little boy with a huge personality. He loves people and has to wave and say "hi" to every stranger we pass. He is a joy. Mateo is a joy. They make being a mom pretty darn easy.
So all-in-all....again, we feel the good LORD has placed us where we need to be. Things have once again just fallen into place. We found a beautiful home to rent....I love this house!.....Mel enjoys his job, we found a great school and a great hospital with a wonderful team of doctors and pediatric dentists....life is good. God is good!
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