Wednesday, August 17, 2011
giving back...
I have found myself on a quest to give back. Right now I am only able to give in small ways but I'd like to think every little bit helps. Back in February I started donating care packages through a program I call MasonsFight4Life. I would love to some day become a non-profit but I have yet to figure out how to do that. I deliver the care packages every other month. They are usually themed to try to narrow down what will be included that month. The first one was snacks and things to keep you busy, 2nd was toiletries, 3rd was arts and crafts things etc. I bring everything to the Cardiac floor and allow the families to help themselves. In June 2011 I put together a Spa Day. Myself and 4 other friends volunteered our time to provide haircuts and manicure to anyone who wanted one (we are all licensed for the record). It was a HUGE hit! We plan on going back every 4 months. The big one I am working on right now is a Cut-A-Thon at the salon I work at. We will be offering haircut and mini spa services for a minimum donation of $20. We also are providing refreshments, entertainment and raffles. We are hoping to raise $5,000 but I have a feeling it will be more like $10,000. I have had an unbelievable amount of support from the community and even local newspapers and radio stations are talking about it. I know its going to be much bigger then we originally thought.
http://www.thereminder.com/features/page2feature/cutathontobenefitc/
http://www.belchertownsentinelonline.com/
Tuesday, August 16, 2011
Mason's Diagnosis
I wish I didn't feel the need to write an entire seperate post about Mason's diagnosis but unfortunately there is a lot to write about...
When I was 20 weeks pregnant Mason was diagnosed with Severe heart disease. Our local hospital admitted they didn't even know what they were looking at because his heart was SO abstract looking. We were told Mason would likely not survive and if he did he would have brain damage and be severly disabled because of lack of oxygen. It was recommended to terminate. A few days and a lot of praying later we saw Dr. Tsirka at Batstate Cardio and she gave us our first ray of hope. Mason's heart was complex but she felt confident that Boston could try to repair it and that he would indeed grow fine and thrive until the umbilical cord was cut and he was left to do it on his own. At 27 weeks we went to Boston and after 8 hours of testing and ultrasounds we got the diagnosis...
Mason was born on 9-8-10 at B/W. He was rushed over to CHB and intubated that night after SATing in the 30's and 40's. At 2 days old he had a sutureless repair for the TAPVR. They told us it was the worst case of TAPVR they have ever attempted to repair. VERY RISKY! He did have a hard time the first couple weeks with getting off the vent. His lungs collaped twice and he stayed on CPAP then high flow O2 for another week. But...after only 30 days we were on our way home. He came home not eating well (maybe 7-10cc) and was tube fed...after only 24 hours at home Mason decided to rip out the tube and downed a 2oz bottle. Over the next few weeks he was eating normally and gaining weight well. Over the next few months he did very well. As expected, his O2 dropped and ended up on home oxygen. When he was 4.5 months old he went in for his Glenn. He was home in 4 days!!! He had a bad "Glenn head" and didn't sleep well but after about 6 weeks he had settled down and has been doing amazing ever since. Mason's O2 is about 92 right now (11months old) and has pretty much no complications or setbacks from surgery. He is learning to walk, talk, he's waving and playing like any other 11 month old would. He is a miracle!
The plan is a Fontan late summer/early fall of 2012. We are terrified and excited about it all at the same time. I think we will be glad to put it past us. We have been told by Dr's that he will likly need a heart transplant within the next 10 years. I don't think about that too much because so far he has done remarkably better then expected so I am betting on it staying that way. When he does need a transplant we are hoping he is older and technology has advanced to a point that they can use his cord blood stem cells (that we banked at birth) to create a new heart or repair the one he has.
I love to meet other families touched by CHB. We KNOW without CHB, Dr. Bergersen and Dr. Emani Mason would not be with us today.
- Heterotaxy Syndrome ( a rare disease that causes your major organs to grow abstractly, in the wrong place, or not at all)
- Infracardiac Total Anomalous Pulmonary Venus Return ( Mason was born with 6 pulmonary viens: 4 going to his liver and two going to his head. They were all tangled up and we were told it was the worst case of TAPVR they have ever attempted to repair.)
- Double Outlet Right Ventricle ( there is question about which ventricle is actually missing. It is very abstract looking but they think he has the right although it is tilted the wrong direction),
- Transposition of the great atreries (The blood in the Aorta and Pulmonary arteries are flowing in the wrong directions)
- Atrial Septal Defect ( So, Mason kinda has a common atrium. They think he might have a very small right atruim with a large ASD. They could never repair it to make 2 atrium so it doesn't really matter in the end),
- Pulmonary Stenosis ( this was actually a GOOD thing at birth because it slowed down the blood flowing to the lungs and he was able to avoid a Norwood or banding)
- Mason is also considered asplenic although after further testing we found that he does have a spleen it just doesn't work. His liver and his spleen decided the trade places. The blood is flowing through it but not cleaning it...we will be going to CHB on 8-22 to learn more about that.
Mason was born on 9-8-10 at B/W. He was rushed over to CHB and intubated that night after SATing in the 30's and 40's. At 2 days old he had a sutureless repair for the TAPVR. They told us it was the worst case of TAPVR they have ever attempted to repair. VERY RISKY! He did have a hard time the first couple weeks with getting off the vent. His lungs collaped twice and he stayed on CPAP then high flow O2 for another week. But...after only 30 days we were on our way home. He came home not eating well (maybe 7-10cc) and was tube fed...after only 24 hours at home Mason decided to rip out the tube and downed a 2oz bottle. Over the next few weeks he was eating normally and gaining weight well. Over the next few months he did very well. As expected, his O2 dropped and ended up on home oxygen. When he was 4.5 months old he went in for his Glenn. He was home in 4 days!!! He had a bad "Glenn head" and didn't sleep well but after about 6 weeks he had settled down and has been doing amazing ever since. Mason's O2 is about 92 right now (11months old) and has pretty much no complications or setbacks from surgery. He is learning to walk, talk, he's waving and playing like any other 11 month old would. He is a miracle!
The plan is a Fontan late summer/early fall of 2012. We are terrified and excited about it all at the same time. I think we will be glad to put it past us. We have been told by Dr's that he will likly need a heart transplant within the next 10 years. I don't think about that too much because so far he has done remarkably better then expected so I am betting on it staying that way. When he does need a transplant we are hoping he is older and technology has advanced to a point that they can use his cord blood stem cells (that we banked at birth) to create a new heart or repair the one he has.
I love to meet other families touched by CHB. We KNOW without CHB, Dr. Bergersen and Dr. Emani Mason would not be with us today.
 |
| MRI picture of pulmonary viens before repair |
Monday, August 15, 2011
Where to begin...
Mason is turning 1 soon. I think back on the last year and sometimes it seems as though I am recalling someone else's life...did this all happen to ME? Its weird how when you are going through something traumatic in life you seem to function on auto pilot. You roll with the punches and keep your eye on that light at the end of the tunnel. For some of us we never get there but luckily for us we did and that light is shining bright. In the end we took our son home. We wake up every morning and kiss his sweet forehead, read him books and listen to the sweet sound of his giggle as we tickle he little feet. Our life might be totally different then we ever pictured it to be but as a whole we have everything we ever wanted. We have 3 beautiful children, an amazing marriage, wonderful friends and most importantly, we have each other.
It is only now that most of the chaos is over that I sit and really think about the last year. I only allow myself to relive bits and pieces. I think If I really took it all in it would be just too much to bare. The day we found Mason had a broken heart we were told to "go home and grieve". At the time I thought we were being told to say goodbye to him. Now I realize what they really were telling me. I have lost something. I have lost what I always thought was "a normal life". I have to say goodbye not to my son but to the life I once had. I have to come to terms with the fact that Mason will never be "normal". He will always have to worry about his health and he will spend way too many days of his life in a hospital. I AM grieving and that process is slow.
I find myself getting caught up in it every once in a while. I think about the fact that at any moment God could take him back. Let me tell you...If you don't have a sick child you will never understand that feeling and I hope you never do. It is TERRIBLE! Every cough, runny nose, sneeze or cut could be the beginning of the end. It makes me CRAZY! I know that in time his immune system will get stronger and once he gets his next (3rd) open heart surgery his heart will be less vulnerable. Time hopefully WILL heal. But for now he is fragile. He has a non-functioning spleen so any cut or scratch could turn into a Staph infection very quickly. His heart and lungs are weak so any cold could easily turn into phenomena. If his heart struggles his lungs will struggle and visa verse. We were told he WILL need a heart transplant at some point in his life but we need to keep his lungs safe to avoid the possibility of a heart and double lung transplant. If it ever got to that it would NOT be good! I worry about sickness and germs everyday but I also remind myself that I can't keep him in a bubble. That is not living. I do what I can to keep him safe but I also let him be a kid. I take him to the park, let him swing on the swings, ride in the grocery cart (after I purell it) and crawl on the floor. A little bit of germs is a good thing...or so I've been told. We don't know what the future will bring but what we do know is that the now is wonderful.
It is only now that most of the chaos is over that I sit and really think about the last year. I only allow myself to relive bits and pieces. I think If I really took it all in it would be just too much to bare. The day we found Mason had a broken heart we were told to "go home and grieve". At the time I thought we were being told to say goodbye to him. Now I realize what they really were telling me. I have lost something. I have lost what I always thought was "a normal life". I have to say goodbye not to my son but to the life I once had. I have to come to terms with the fact that Mason will never be "normal". He will always have to worry about his health and he will spend way too many days of his life in a hospital. I AM grieving and that process is slow.
I find myself getting caught up in it every once in a while. I think about the fact that at any moment God could take him back. Let me tell you...If you don't have a sick child you will never understand that feeling and I hope you never do. It is TERRIBLE! Every cough, runny nose, sneeze or cut could be the beginning of the end. It makes me CRAZY! I know that in time his immune system will get stronger and once he gets his next (3rd) open heart surgery his heart will be less vulnerable. Time hopefully WILL heal. But for now he is fragile. He has a non-functioning spleen so any cut or scratch could turn into a Staph infection very quickly. His heart and lungs are weak so any cold could easily turn into phenomena. If his heart struggles his lungs will struggle and visa verse. We were told he WILL need a heart transplant at some point in his life but we need to keep his lungs safe to avoid the possibility of a heart and double lung transplant. If it ever got to that it would NOT be good! I worry about sickness and germs everyday but I also remind myself that I can't keep him in a bubble. That is not living. I do what I can to keep him safe but I also let him be a kid. I take him to the park, let him swing on the swings, ride in the grocery cart (after I purell it) and crawl on the floor. A little bit of germs is a good thing...or so I've been told. We don't know what the future will bring but what we do know is that the now is wonderful.
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