Leah BensonSurgery in Autistic 8-year-old
November 29th 2008 10:21
Last night, as I was getting Max ready for bed, I noticed something strange about his body, or more specifically, the size of his left testicle. It was huge! His right testicle was about the size of a peanut, which is normal for an 8-year-old. But the right one looked more like an elongated egg. So, early this morning, the minute the specialty clinic of Children's Hospital turned on the phones, I called for an appointment. I was told that 2:30 was the earliest appointment available.
We got to the clinic at 2:30 and I took Max back into a room. The doctor came in, said hello to Max, took one look at his enlarged testicle, and told me that he needed an ultrasound-- immediately. Ten minutes later I was trying desperately to keep Max quiet on the ultrasound table as a kind nurse moved a "flashlight" around his swollen and painful testes. This was not an easy job. First of all, Max was scared. His entire body was shaking and he was crying and screaming. "He needs to hold still," the tech repeated.
I tried explaining the test to him and showed him the pictures appearing on the screen next to his head. But within seconds he would start fighting again. I kneeled beside him and held his chest to the table, whispering about school and video games, promising him there would be no owies. Ten minutes felt like an eternity. Finally, the test was finished and Max had his boxers back on in record time.
We made the walk back to the clinic and were taken into a different room. Max was screaming hysterically in anger, having believed he was done with the doctor and without a picture schedule, I had no way to explain it to him. For ten minutes, I held my fingers in my ears and waited nervously for the results. And what were the results, you wonder?
Max needs surgery, ASAP. He does not appear to have a tumor, as feared (insert huge sigh of relief here!), though some of the fluid appears a little "chunky" so will be tested during surgery. He has an extremely large hydrocele -- a sac filled with fluid surrounding the testes.
Complicating matters, Max was also born with a birth defect called hypospadias* so he has already endured multiple surgeries on his penis and testicles. These previous surgeries will make the hydrocele surgery less routine. Monday morning we will meet with the urologist to discuss our surgical options and then decide when to do the surgery. It needs to be done quickly, so we're planning for Wednesday or Thursday. But we also have to plan for Max's safety regarding his Primary Immunodeficiency.** Typically this involves scheduling Max's monthly IVIG (a blood transfusion of pure immuneglobulin for protection against infection) while he is hospitalized for the surgery.
As anyone who parents or works with an autistic child knows: surgeries are horrific. The combination of spending time in the hospital, the anestestia, the post-op meds, the change in routine, the pain... all result in a huge increase in autistic behaviors. In the past, when Max has undergone surgery, he has been extremely violent and withdrawn for a month or two following. Just in time for Christmas! Not to mention how unfair it is to subject my poor little angel to more pain. He has been so happy this Fall. He's babbling more than ever, he's loving and sweet. And now this. It just isn't fair. ):
We will let you know how everything goes. Please keep Max in your prayers and thoughts!
* "Hypospadias is a birth defect of the urethra that involves an abnormally placed urinary meatus (opening). Instead of opening at the tip of the glans of the penis, a hypospadic urethra opens anywhere along a line (the urethral groove) running from the tip along the underside (ventral aspect) of the shaft to the junction of the penis and scrotum or perineum." -Wikipedia
** Before Max was two-years-old, he was diagnosed with an immune deficiency called hypogammaglobulinemia. His body does not make immunoglobulin so he needs to get it from other people in the form of a blood transfusion. He has a port-a-cath, which is like a permament IV access, in his chest for these treatments.
We got to the clinic at 2:30 and I took Max back into a room. The doctor came in, said hello to Max, took one look at his enlarged testicle, and told me that he needed an ultrasound-- immediately. Ten minutes later I was trying desperately to keep Max quiet on the ultrasound table as a kind nurse moved a "flashlight" around his swollen and painful testes. This was not an easy job. First of all, Max was scared. His entire body was shaking and he was crying and screaming. "He needs to hold still," the tech repeated.
ultrasound of a hydrocele
I tried explaining the test to him and showed him the pictures appearing on the screen next to his head. But within seconds he would start fighting again. I kneeled beside him and held his chest to the table, whispering about school and video games, promising him there would be no owies. Ten minutes felt like an eternity. Finally, the test was finished and Max had his boxers back on in record time.
We made the walk back to the clinic and were taken into a different room. Max was screaming hysterically in anger, having believed he was done with the doctor and without a picture schedule, I had no way to explain it to him. For ten minutes, I held my fingers in my ears and waited nervously for the results. And what were the results, you wonder?
Max needs surgery, ASAP. He does not appear to have a tumor, as feared (insert huge sigh of relief here!), though some of the fluid appears a little "chunky" so will be tested during surgery. He has an extremely large hydrocele -- a sac filled with fluid surrounding the testes.
diagram of a testicular hydrocele
Complicating matters, Max was also born with a birth defect called hypospadias* so he has already endured multiple surgeries on his penis and testicles. These previous surgeries will make the hydrocele surgery less routine. Monday morning we will meet with the urologist to discuss our surgical options and then decide when to do the surgery. It needs to be done quickly, so we're planning for Wednesday or Thursday. But we also have to plan for Max's safety regarding his Primary Immunodeficiency.** Typically this involves scheduling Max's monthly IVIG (a blood transfusion of pure immuneglobulin for protection against infection) while he is hospitalized for the surgery.
As anyone who parents or works with an autistic child knows: surgeries are horrific. The combination of spending time in the hospital, the anestestia, the post-op meds, the change in routine, the pain... all result in a huge increase in autistic behaviors. In the past, when Max has undergone surgery, he has been extremely violent and withdrawn for a month or two following. Just in time for Christmas! Not to mention how unfair it is to subject my poor little angel to more pain. He has been so happy this Fall. He's babbling more than ever, he's loving and sweet. And now this. It just isn't fair. ):
We will let you know how everything goes. Please keep Max in your prayers and thoughts!
* "Hypospadias is a birth defect of the urethra that involves an abnormally placed urinary meatus (opening). Instead of opening at the tip of the glans of the penis, a hypospadic urethra opens anywhere along a line (the urethral groove) running from the tip along the underside (ventral aspect) of the shaft to the junction of the penis and scrotum or perineum." -Wikipedia
** Before Max was two-years-old, he was diagnosed with an immune deficiency called hypogammaglobulinemia. His body does not make immunoglobulin so he needs to get it from other people in the form of a blood transfusion. He has a port-a-cath, which is like a permament IV access, in his chest for these treatments.
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