July 16, 2014
We have a date! His heart surgery will be on July 16 8:00am at UNC Children's Hospital. We will have preop appointments and meet the surgeon earlier that week. Not much more information has been provided, but we know that he will be in ICU for a little while and we still expect a hospital stay of 2 weeks to a month for recovery.
Thank you for your continued support and prayers.
Thursday, June 26, 2014
Tuesday, June 24, 2014
Hurry up and wait!
Hi everyone! I wish I was coming to you with a surgery update...but no such luck! However, today we had a follow up appointment with Williams normal pediatrician. He has been with us since William was born and Jacks pediatrician before that. Can I just say that he is amazing? He is a very down to earth guy and knows when to put on his 'parent hat' to keep me from panicking. He said it could take a little while for the cardiologists to determine an approach since it's such a big hospital. If we don't hear by Friday he said he will put in a call for us.
And now we hurry up and wait!
Until then...he has put William on an iron supplement to strengthen his blood supply for surgery. We were told he will need a blood transfusion so that's a little scary!! {par for the course during this type of surgery} He is also having me add a formula powder to his breast milk to help plump him up before surgery. Anything we can do to make him stronger we will do! His incision sights from the cath are healing great and he said overall he looks good.
Emotionally, I haven't cracked yet. I'm pretty proud of that, but I know at some point I will lose it. Logistically, we have a lot to figure out. Jack is only 20 months old and to leave him for any amount of time breaks my heart. For him, I try to stay strong to keep his little life as normal as possible. I'm so lucky and blessed to have family close by that can help us through this journey.
William has an amazing group of doctors behind him...and we have a lot of positive thoughts and prayers pushing him along thanks to all of you! It truly means the world to us!
And now we hurry up and wait!
Until then...he has put William on an iron supplement to strengthen his blood supply for surgery. We were told he will need a blood transfusion so that's a little scary!! {par for the course during this type of surgery} He is also having me add a formula powder to his breast milk to help plump him up before surgery. Anything we can do to make him stronger we will do! His incision sights from the cath are healing great and he said overall he looks good.
Emotionally, I haven't cracked yet. I'm pretty proud of that, but I know at some point I will lose it. Logistically, we have a lot to figure out. Jack is only 20 months old and to leave him for any amount of time breaks my heart. For him, I try to stay strong to keep his little life as normal as possible. I'm so lucky and blessed to have family close by that can help us through this journey.
William has an amazing group of doctors behind him...and we have a lot of positive thoughts and prayers pushing him along thanks to all of you! It truly means the world to us!
Sunday, June 22, 2014
A small elephant is still an elephant
{A quote that my parents keep saying is "How do you eat an elephant? One bite at a time..." We are so frightened by the elephant in the room and we don't even know how big or small it is. Either way, it's still an elephant and it's still huge compared to anything else}
Since this whole ordeal began, we have had so many people reaching out to us. Thank you for that. We appreciate the thoughts and prayers more than you will ever know!! I want to keep you all informed as best as I can so I decided to start up this blog again. I firmly believe that God blessed us with this little boy and we are determined to be the best parents that we can be for him.
Let's start from the beginning. William went in for his two month checkup and the pediatrician detected a heart murmur. Because of his age, he referred us to a pediatric cardiologist to rule out any major issues. At the appointment with the cardiologist, they performed an echocardiogram to determine where the murmur was coming from. Originally it was thought that he had 'VSD'.
Needless to say, his appointment didn't go as we had originally thought. The echo showed signs of valve narrowing, diagnosed as aortic stenosis. We were told that these tests can be inconclusive and sometimes exaggerate blockage, so the cardiologist referred us to UNC Children's Hospital at Chapel Hill (an hour away from us).
One week later we had a cardiac catheterization performed. We arrived at the hospital at 9:00am unsure of what exactly would happen. We had doctors come speak with us and signed a number of consent forms. At 12:30pm the anesthesiologist came in to get William. He wasn't allowed to eat after 5am because it was supposed to start at 9:00am...you can imagine my patience at that point. At 3:30pm the testing was complete. Because he was so little they had some concern that he may need to stay overnight. His vitals were stable until 6:00pm so they were getting discharge paperwork ready for us. And then his heart rate jumped and oxygen levels dropped. That's when they decided to keep us overnight on the pediatric cardiology floor to monitor him (aka the CICC). Luckily, we had an uneventful night (other than not sleeping a wink) and were discharged the next morning.
Rewind a little bit...once William came out of anesthesia, the cardiologist showed us the results. The blockage was far worse than the echocardiogram showed. Remember how I said the echo usually exaggerates blockage? Well Williams was worse than they expected. Not only does he have narrowing, he has multiple areas of narrowing above and below his heart. Finding one spot is normal for this diagnosis and can be fixed pretty routinely. In his case, it is far more complicated due to the multiple areas and his age/weight. Imagine an hour glass. The part that is squeezed in the middle is like Williams valve...only it's supposed to be the same width from top to bottom. Yes, I know what you're thinking...and that is why the cardiologists are calling this 'moderate to severe' blockage. This is causing his heart to work twice as hard as normal. The blood is having to pump extra hard and fast to keep up. It is not something that can fix itself, nor is it something that can be completely fixed with surgery.
He has a team of pediatric cardiologists as well as two pediatric heart surgeons working on his case. On Monday, they will all meet and discuss what approach they will take to repair his little heart. It isn't just one opinion...it's an entire team working together. We couldn't ask for anything else to help solve this problem. We've been told to expect open heart surgery in which his heart will be put on bypass. We've also been told to expect and prepare for an extended stay of one month in the hospital. This will include time in the pediatric ICU (PICU) as well as on the pediatric cardiac floor (CICC).
And now...we wait. As much as I don't want it to be an elephant, it is. And even a small elephant is still an elephant.
Since this whole ordeal began, we have had so many people reaching out to us. Thank you for that. We appreciate the thoughts and prayers more than you will ever know!! I want to keep you all informed as best as I can so I decided to start up this blog again. I firmly believe that God blessed us with this little boy and we are determined to be the best parents that we can be for him.
Let's start from the beginning. William went in for his two month checkup and the pediatrician detected a heart murmur. Because of his age, he referred us to a pediatric cardiologist to rule out any major issues. At the appointment with the cardiologist, they performed an echocardiogram to determine where the murmur was coming from. Originally it was thought that he had 'VSD'.
Needless to say, his appointment didn't go as we had originally thought. The echo showed signs of valve narrowing, diagnosed as aortic stenosis. We were told that these tests can be inconclusive and sometimes exaggerate blockage, so the cardiologist referred us to UNC Children's Hospital at Chapel Hill (an hour away from us).
One week later we had a cardiac catheterization performed. We arrived at the hospital at 9:00am unsure of what exactly would happen. We had doctors come speak with us and signed a number of consent forms. At 12:30pm the anesthesiologist came in to get William. He wasn't allowed to eat after 5am because it was supposed to start at 9:00am...you can imagine my patience at that point. At 3:30pm the testing was complete. Because he was so little they had some concern that he may need to stay overnight. His vitals were stable until 6:00pm so they were getting discharge paperwork ready for us. And then his heart rate jumped and oxygen levels dropped. That's when they decided to keep us overnight on the pediatric cardiology floor to monitor him (aka the CICC). Luckily, we had an uneventful night (other than not sleeping a wink) and were discharged the next morning.
Rewind a little bit...once William came out of anesthesia, the cardiologist showed us the results. The blockage was far worse than the echocardiogram showed. Remember how I said the echo usually exaggerates blockage? Well Williams was worse than they expected. Not only does he have narrowing, he has multiple areas of narrowing above and below his heart. Finding one spot is normal for this diagnosis and can be fixed pretty routinely. In his case, it is far more complicated due to the multiple areas and his age/weight. Imagine an hour glass. The part that is squeezed in the middle is like Williams valve...only it's supposed to be the same width from top to bottom. Yes, I know what you're thinking...and that is why the cardiologists are calling this 'moderate to severe' blockage. This is causing his heart to work twice as hard as normal. The blood is having to pump extra hard and fast to keep up. It is not something that can fix itself, nor is it something that can be completely fixed with surgery.
He has a team of pediatric cardiologists as well as two pediatric heart surgeons working on his case. On Monday, they will all meet and discuss what approach they will take to repair his little heart. It isn't just one opinion...it's an entire team working together. We couldn't ask for anything else to help solve this problem. We've been told to expect open heart surgery in which his heart will be put on bypass. We've also been told to expect and prepare for an extended stay of one month in the hospital. This will include time in the pediatric ICU (PICU) as well as on the pediatric cardiac floor (CICC).
And now...we wait. As much as I don't want it to be an elephant, it is. And even a small elephant is still an elephant.
Subscribe to:
Posts (Atom)