Things in the past year after Jerry's diagnosis were stressful and uncertain but stable. Jerry has been very active and happy, although he has had significant problems with eating and growth. Encouraged by our cardiologist, we decided to have a second opinion at Chicago Children's Memorial Hospital where many more kids with JJ's condition have been diagnosed and treated. We simply wanted to ask more questions about causes and possible future outcomes. A nice simple consultation.
Jerry's echo here was done as if he were brand new. Every part of his heart was thoroughly evaluated. Echos since his diagnosis had not been as thorough because he had already had a much more accurate evaluation of the heart with the cath procedure. Here comes the second nightmare... almost a repeat of the first at the same time of year. We waited and waited to see the doctor after JJ's testing. I was by myself with Jerry since John had to work and a good friend had offered to care for Isaac. Finally, the doctor showed up and slowly explained that he had been talking to the heart transplant team about Jerry and that is why he was late. My ears heard "very, very sick, not going home, and open heart surgery." I believe I begged to go home for a few days and yelled that it's not right, it's not true, and he's fine. I continued saying that we needed to go home and get Isaac. Obviously no common sense involved in my shock and panic. I gathered myself together and played with Jerry making his last hour or so before admitting as fun as possible and took pictures, knowing at this point, that he would soon look very different.
This echo showed that Jerry did indeed have ALCAPA...the anomaly completely ruled out during the heart cath procedure last year. Since Jerry's heart was formed in utero, it was receiving the wrong kind of blood (not oxygenated) since the left coronary artery was in the wrong place. The cath films from a year ago were quickly retrieved and DID show the ALCAPA. The surgeon who did the cath last year did not see it. Our cardiologist obviously and without fault based his care on the surgeons findings. Jerry would need open heart surgery as soon as possible to put the artery in the right place. His heart function had worsened tremendously in the past few months. Since the surgeons were busy doing a heart transplant, Jerry's surgery would wait until Friday June 19th. During this appointment and wait for a bed in PICU, we were so thankful for Dr. Jeffery Gossett, nurse Sherry, social worker Sandy Rubovits, nurse Linda, Dr. Kathleen Gambetta, echo tech Dale, and Dr. Elise Duffy. To all of you, thanks so much for your compassion and support at such a traumatic time.
Jerry's echo here was done as if he were brand new. Every part of his heart was thoroughly evaluated. Echos since his diagnosis had not been as thorough because he had already had a much more accurate evaluation of the heart with the cath procedure. Here comes the second nightmare... almost a repeat of the first at the same time of year. We waited and waited to see the doctor after JJ's testing. I was by myself with Jerry since John had to work and a good friend had offered to care for Isaac. Finally, the doctor showed up and slowly explained that he had been talking to the heart transplant team about Jerry and that is why he was late. My ears heard "very, very sick, not going home, and open heart surgery." I believe I begged to go home for a few days and yelled that it's not right, it's not true, and he's fine. I continued saying that we needed to go home and get Isaac. Obviously no common sense involved in my shock and panic. I gathered myself together and played with Jerry making his last hour or so before admitting as fun as possible and took pictures, knowing at this point, that he would soon look very different.
This echo showed that Jerry did indeed have ALCAPA...the anomaly completely ruled out during the heart cath procedure last year. Since Jerry's heart was formed in utero, it was receiving the wrong kind of blood (not oxygenated) since the left coronary artery was in the wrong place. The cath films from a year ago were quickly retrieved and DID show the ALCAPA. The surgeon who did the cath last year did not see it. Our cardiologist obviously and without fault based his care on the surgeons findings. Jerry would need open heart surgery as soon as possible to put the artery in the right place. His heart function had worsened tremendously in the past few months. Since the surgeons were busy doing a heart transplant, Jerry's surgery would wait until Friday June 19th. During this appointment and wait for a bed in PICU, we were so thankful for Dr. Jeffery Gossett, nurse Sherry, social worker Sandy Rubovits, nurse Linda, Dr. Kathleen Gambetta, echo tech Dale, and Dr. Elise Duffy. To all of you, thanks so much for your compassion and support at such a traumatic time.
I'm so glad you got a couple of pictures of "Happy Jerry" before the surgery -- he looks SO happy to be in your arms!
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