Dec 18, 2012:
We arrived at Primary's around 9:30 AM. We registered, signed consents, met with the anesthesiologist and finally Dr. Gray. He told us he likes his patients to be boring, not interesting, and that hopefully it would only take an hour or 2. We followed him downstairs to the operating room. It was really hard to hand William over to the nurse and see the doors shut behind us. They gave us a pager so we grabbed some food to make the time go faster. Finally 3 hours later our pager went off which meant we could go meet with the doctor. We sat down with Dr. Gray and the first thing he says was that William's heart was very interesting. That was not what I wanted to hear. Not just interesting, but very interesting. Not nessesarily the defects he found, just the combination of them all. He found a couple VSD’s (hole between ventriles), a large ASD (hole between atruim), and a LSVC (Left superior venacava). He said because the Right Ventricle was so
small, it couldn’t handle the amount of blood and the pressure of pumping blood to the body. The Right Ventricle would fill up with blood and
then the remaining blood would get backed up to the lungs. Then as the ventricle would pump to the body some blood would go across the ASD because the pressure was lower on the other side. So
blood was mixing over and over and they were unable to fix it with a heart cath. Dr Gray didn't have a solution when we finished talking with him but he knew surgery would need to be done within the next couple weeks. If they were to wait they would risk the heart getting sick and going into heart failure and at that point they wouldn't have many options. He kept saying over and over that William's heart was very complicated. He wanted to disscuss it with the other doctors and see what they thought was best.
This was very hard to hear as we had hoped that nothing surgerical would need to be done, especially this soon. I was so scared because the doctor didn't know what the solution was. We were taken upstairs where William recovered from being sedated and were finally able to come home around 8PM.
Over the next 2 weeks: *Remember I said William's heart is complicated and pretty confusing and there are not any pictures that show exactly what it looks like.
Dr. Gray called a couple time and said he wanted to continue talking with different doctors to figure out what to do and to plan for surgery in January. The first week of January he called and said they had decided what needed to be done. I met with Dr Pinto that week to go over the details. Two open heart surgeries would need to be done. The "Double Switch".
The first one was planned for Jan 17 which involved the Arterial Switch - switching the pulmonary and aorta arteries. This would make his blood flow backwards, blood would be pumped to the body first and then the lungs making his Saturation (SAT) levels or the amount of oxygenated blood much lower - making him a "blue baby". This video explains the procedue on someone with D type or uncorrected TGA.
The second would be done the earliest at 4 months of age (end of March) which would involve the Atrial Switch w/ a Hemi Mustard or the Atrial Switch w/ Bidirection Glenn. The Atrial Switch would involve baffling (making a wall) the blood from the Inferior Venacava (IVC) to the Right Ventricle (RV) as well as baffling William's extra LSVC into it. This is a proceedure that is done maybe once every other year at Primary's and maybe 50 times every year across the nation. So it's not done alot and they don't know exactly what to expect during recovery. The Bidirection Glenn involves redirecting the blood from the Superior Venacava (SVC) to the Pulmonary Artery or in William's case to his Aorta Artery so that the heart doesn't need to pump the blood to the lungs. This needed to be done because his small RV can't handle the amount of blood.
There is not an exact picture of what William's heart looks like but this is very similiar to the Atrial Switch w/ a Hemi Mustard. The difference of this and the Bidirection Glenn is that the SVC or #1 would be directed straight to the Pulmonary Artery which lead to the lungs.
This was very hard to hear as we had hoped that nothing surgerical would need to be done, especially this soon. I was so scared because the doctor didn't know what the solution was. We were taken upstairs where William recovered from being sedated and were finally able to come home around 8PM.
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Waiting to meet with the doctor |
He was so hungry |
He learned to suck his thumb |
Over the next 2 weeks: *Remember I said William's heart is complicated and pretty confusing and there are not any pictures that show exactly what it looks like.
Dr. Gray called a couple time and said he wanted to continue talking with different doctors to figure out what to do and to plan for surgery in January. The first week of January he called and said they had decided what needed to be done. I met with Dr Pinto that week to go over the details. Two open heart surgeries would need to be done. The "Double Switch".
The first one was planned for Jan 17 which involved the Arterial Switch - switching the pulmonary and aorta arteries. This would make his blood flow backwards, blood would be pumped to the body first and then the lungs making his Saturation (SAT) levels or the amount of oxygenated blood much lower - making him a "blue baby". This video explains the procedue on someone with D type or uncorrected TGA.
The second would be done the earliest at 4 months of age (end of March) which would involve the Atrial Switch w/ a Hemi Mustard or the Atrial Switch w/ Bidirection Glenn. The Atrial Switch would involve baffling (making a wall) the blood from the Inferior Venacava (IVC) to the Right Ventricle (RV) as well as baffling William's extra LSVC into it. This is a proceedure that is done maybe once every other year at Primary's and maybe 50 times every year across the nation. So it's not done alot and they don't know exactly what to expect during recovery. The Bidirection Glenn involves redirecting the blood from the Superior Venacava (SVC) to the Pulmonary Artery or in William's case to his Aorta Artery so that the heart doesn't need to pump the blood to the lungs. This needed to be done because his small RV can't handle the amount of blood.
There is not an exact picture of what William's heart looks like but this is very similiar to the Atrial Switch w/ a Hemi Mustard. The difference of this and the Bidirection Glenn is that the SVC or #1 would be directed straight to the Pulmonary Artery which lead to the lungs.
January 6th:
Today was a happy day! William smiled for the first time at us. He looks just like Tyler with his squinty eyes. What a handsome little boy.
Today was a happy day! William smiled for the first time at us. He looks just like Tyler with his squinty eyes. What a handsome little boy.
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