This blog was supposed to post in chronological order from recent past to present. This post will change all of my best laid plans. Prior to today, my darkest day was when I found out that Jacob was going to be born with half a heart. That was 11/3/10. I am going to fast-forward (I'll go back, I swear) past the birth of the twins, Jacob's Hybrid Norwood procedure, first atrial septostomy and Homecoming up to just prior to his second atrial septostomy.
Jake had been home since March 7. He started developing problems holding food down and it was determined that the main cause was that the Atrial Septal Defect (ASD) in his heart was closing up and he wasn't getting the amount of blood that he needed to flow throughout his little body. It was decided that he would need another catheter procedure called an atrial septostomy to open it back up. The idea was to use a balloon with tiny blades on it to cut open the atrial septum and allow blood to flow freely between the two atria. The blades weren't enough and the doctor decided to put in a stent to keep the ASD open. This meant that he would need blood thinners to prevent clotting around the stent. The procedure went well and he would be home in a day or two. That was Thursday April, 21st. On Saturday morning, the day we expected to take him home, we received panicked emergency phone calls from the hospital informing us that Jacob was in distress and we needed to get there ASAP. Forty-five minutes, 80 MPH and a driving rainstorm later, we were tossing the keys to the valet and running to the elevators. Jacob had developed a mystery malady the doctors attributed to a post-op infection. They still really don't know what caused him to get so sick so quickly. A few days later (Thursday April 28th) he was regaining consciousness and opening his eyes. He had an odd stare to the right and would not look left (see first photo above), probably from all the sedation which was slow to wear off. The following Sunday we came in for another visit since he had been extubated and was breathing with the aid of a CPAP (Constant Positive Air Pressure). He still had that odd stare, even when being held by his mother (next photo). I started to worry and raised an alarm. A neurologist was called in for a quick examination and she called for an ultrasound of Jacob's brain. They said that the sedatives given to him were strong and would take some time to entirely leave his body and this was probably the cause. Something was not right and it started eating at me. They scheduled a CT scan for the following morning. That morning was today, my darkest day. Jacob had suffered from a large stroke in his right hemisphere. At this point, 9:30PM, I am still in shock. I don't know where to turn. I don't know what to do. Tomorrow we are meeting with the neurologist and staff to see what can be done and the extent of the damage. I am worried sick.
Jake had been home since March 7. He started developing problems holding food down and it was determined that the main cause was that the Atrial Septal Defect (ASD) in his heart was closing up and he wasn't getting the amount of blood that he needed to flow throughout his little body. It was decided that he would need another catheter procedure called an atrial septostomy to open it back up. The idea was to use a balloon with tiny blades on it to cut open the atrial septum and allow blood to flow freely between the two atria. The blades weren't enough and the doctor decided to put in a stent to keep the ASD open. This meant that he would need blood thinners to prevent clotting around the stent. The procedure went well and he would be home in a day or two. That was Thursday April, 21st. On Saturday morning, the day we expected to take him home, we received panicked emergency phone calls from the hospital informing us that Jacob was in distress and we needed to get there ASAP. Forty-five minutes, 80 MPH and a driving rainstorm later, we were tossing the keys to the valet and running to the elevators. Jacob had developed a mystery malady the doctors attributed to a post-op infection. They still really don't know what caused him to get so sick so quickly. A few days later (Thursday April 28th) he was regaining consciousness and opening his eyes. He had an odd stare to the right and would not look left (see first photo above), probably from all the sedation which was slow to wear off. The following Sunday we came in for another visit since he had been extubated and was breathing with the aid of a CPAP (Constant Positive Air Pressure). He still had that odd stare, even when being held by his mother (next photo). I started to worry and raised an alarm. A neurologist was called in for a quick examination and she called for an ultrasound of Jacob's brain. They said that the sedatives given to him were strong and would take some time to entirely leave his body and this was probably the cause. Something was not right and it started eating at me. They scheduled a CT scan for the following morning. That morning was today, my darkest day. Jacob had suffered from a large stroke in his right hemisphere. At this point, 9:30PM, I am still in shock. I don't know where to turn. I don't know what to do. Tomorrow we are meeting with the neurologist and staff to see what can be done and the extent of the damage. I am worried sick.
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