Here we are! This is the week! Landen is ready for his next surgery!
We have enjoyed a great week and weekend with this beautiful Fall weather!! Grammy and Grampa got here last Tuesday and have temporarily moved in to give the girls the support they need and seamless days while we juggle Landen up at Childrens. AND... Aunt Erica, Uncle Chris and sweet cousin Audrey got here last Wednesday for a visit! We have had a fun week with an afternoon and dinner in Boston on Friday and apple picking on Sat. with fresh made donuts, apples and caramel (thanks to Maddie for wanting to make desert for everyone :) ), bonfire and a movie night. Just before we face the difficult times of the next few weeks we are reminded of how blessed we are with our family and the many things God has provided and cared for us.
Landen has been growing so well!!! With his particular cardiac diagnosis they are sooo thrilled when they see a little chunker come in so with his large kissable cheeks, extra chins and squeezable thighs everyone here is so proud of him. With his great growth it brings him to this next phase, he is stronger and ready for this surgery and he is at the same time outgrowing the PA band he had placed in the first surgery. Outgrowing the PA band has the opposite effect of what we are used to where now he is not getting enough pulmonary blood flow. In the past month he started showing some signs of being ready for this surgery. He was gaining about 40 grams a day and dropped down to 15 grams a day. His O2 sats have dipped into the 60's a few times and so his Cardiologist felt that moving the surgery up to 5 months old instead of 6 months was better.
Friday my mom and I brought him in for his Cath preop testing. His blood work showed that his hematocrit (red blood cell count) was high at 57. This is not too surprising as his pulmonary blood flow is restricted now so his body feels the lack of blood to his lungs and then produces more. But because it is high his blood is too think and sticky making it harder for the Cath procedure, risky for clotting and strokes so they wanted him to have an IV and a night of fluids to help thin it out. So here we are, having a little sleep over for a nice long nights drink! ;)
Tomorrow he is first case for a Cath procedure and a sedated echo. They always do this procedure before the Glenn (the name of this surgery) to check the pressure in all the chambers of the heart and lungs to see if there is any pulmonary resistance and to see if there are any collateral vessels that formed. If they find any vessels they will use a coil to close them as they can misdirect the blood flow and could circulate oxygenated blood right back to the lungs and not to the body or send non oxygenated blood from the body back to the body without going to the lungs first. If the pressures are too high or if there are any other abnormalities that have formed the risk of the Glenn could be too high and they will have to reassess this coming surgery plan.
There is a small chance we could go home for tomorrow night, but likely they will want to keep him overnight to monitor and discharge on Tuesday. Prayerfully we will go home Tuesday enjoy an evening with family and then head back up on Wednesday for Surgery. Tomorrow's results will let us know the next steps for the week and surgery.
After the Glenn it is expected that he will be much more stable. He will gain more energy and have a fresh start to grow and learn and just be a baby! We are happy to be getting through this phase of our journey.
George and I are so blessed to have the support of our family and the prayers and thoughts of all our friends and relatives!!! We couldn't do this all without you.
I have a phrase in my living room that says:
"I don't know what tomorrow holds. But I know who holds tomorrow. "
We will begin this next phase knowing that Landen and our family are in the powerful, loving hands of our creator.
Thank you all so much for your prayers.
George, Ashley, Madison, Lyla and Landen
We have enjoyed a great week and weekend with this beautiful Fall weather!! Grammy and Grampa got here last Tuesday and have temporarily moved in to give the girls the support they need and seamless days while we juggle Landen up at Childrens. AND... Aunt Erica, Uncle Chris and sweet cousin Audrey got here last Wednesday for a visit! We have had a fun week with an afternoon and dinner in Boston on Friday and apple picking on Sat. with fresh made donuts, apples and caramel (thanks to Maddie for wanting to make desert for everyone :) ), bonfire and a movie night. Just before we face the difficult times of the next few weeks we are reminded of how blessed we are with our family and the many things God has provided and cared for us.
Landen has been growing so well!!! With his particular cardiac diagnosis they are sooo thrilled when they see a little chunker come in so with his large kissable cheeks, extra chins and squeezable thighs everyone here is so proud of him. With his great growth it brings him to this next phase, he is stronger and ready for this surgery and he is at the same time outgrowing the PA band he had placed in the first surgery. Outgrowing the PA band has the opposite effect of what we are used to where now he is not getting enough pulmonary blood flow. In the past month he started showing some signs of being ready for this surgery. He was gaining about 40 grams a day and dropped down to 15 grams a day. His O2 sats have dipped into the 60's a few times and so his Cardiologist felt that moving the surgery up to 5 months old instead of 6 months was better.
Friday my mom and I brought him in for his Cath preop testing. His blood work showed that his hematocrit (red blood cell count) was high at 57. This is not too surprising as his pulmonary blood flow is restricted now so his body feels the lack of blood to his lungs and then produces more. But because it is high his blood is too think and sticky making it harder for the Cath procedure, risky for clotting and strokes so they wanted him to have an IV and a night of fluids to help thin it out. So here we are, having a little sleep over for a nice long nights drink! ;)
Tomorrow he is first case for a Cath procedure and a sedated echo. They always do this procedure before the Glenn (the name of this surgery) to check the pressure in all the chambers of the heart and lungs to see if there is any pulmonary resistance and to see if there are any collateral vessels that formed. If they find any vessels they will use a coil to close them as they can misdirect the blood flow and could circulate oxygenated blood right back to the lungs and not to the body or send non oxygenated blood from the body back to the body without going to the lungs first. If the pressures are too high or if there are any other abnormalities that have formed the risk of the Glenn could be too high and they will have to reassess this coming surgery plan.
There is a small chance we could go home for tomorrow night, but likely they will want to keep him overnight to monitor and discharge on Tuesday. Prayerfully we will go home Tuesday enjoy an evening with family and then head back up on Wednesday for Surgery. Tomorrow's results will let us know the next steps for the week and surgery.
After the Glenn it is expected that he will be much more stable. He will gain more energy and have a fresh start to grow and learn and just be a baby! We are happy to be getting through this phase of our journey.
George and I are so blessed to have the support of our family and the prayers and thoughts of all our friends and relatives!!! We couldn't do this all without you.
I have a phrase in my living room that says:
"I don't know what tomorrow holds. But I know who holds tomorrow. "
We will begin this next phase knowing that Landen and our family are in the powerful, loving hands of our creator.
Thank you all so much for your prayers.
George, Ashley, Madison, Lyla and Landen
Comments
Post a Comment