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Thank you for taking the time to learn about our son, Zane's journey. Our son Zane, is 17 years old and is going to be a Senior in High School. He was diagnosed with Scleroderma 6years ago. Zane always flashes an amazing smile, maintains his positive attitude and gives 100% in everything he does. Through all his medicines and treatments he's maintained all A's in school. He is on the Varsity Golf Team, does competitive karate & plays hockey.
You may or not be aware that Zane has had a rough Spring. He was diagnosed with influenza in March and he just never seemed to get back to100%. He missed over 25 days of school from the time of his illness to the end of school in June. He battled a cold that seemed to keep coming back. He would occasionally still get low grade fevers, but none lasted more than a day so his rheumatologist was not concerned.
On June 29th, Zane complained of not feeling well after golf. He had been under the weather most of the week. He had a low fever that night. By the next day Zane was throwing up and said he thought he had a “migraine.” Although he never had one, he was familiar enough with them due to Wade’s(his brother) chronic ones. Just to be safe I made an appointment with his pediatrician first thing Monday morning.
By Sunday morning he had a worsening headache and began complaining of eye & jaw pain. Monday morning around 4am he awoke to his eye being swollen shut. We were in the pediatrician’s office by 10am. He was given 2 antibiotics shots. We were then advised that if his pain increased or if his symptoms didn't improve in the next 4-6 hours to go to Rady's Children's Hospital. He took a nap when we got home. When he woke up he was in tears from the pain. Those of you who know Zane know he is a tough kid. So I knew it was time to go. I packed a bag and we arrived at the hospital around 3pm. Fortunately only one person was ahead of him. He was given a large dose of pain medication while they ordered a CT of his eye area. The 2 hour wait for the CT was the longest part of our day. It was all a whirlwind after that.
15 minutes after we came down from CT he was moved to the room across from the main nursing station for closer monitoring. Before the nurse had him settled into the room, 3 doctors arrived all within seconds of each other: a Neurosurgeon, an Infectious disease doctor and the head of the Pediatric ICU. The CT showed a large abscess behind his right eye. The abscess was not only pushing out on his eye, but it appeared to be extending into his skull and therefore putting pressure on and displacing his brain. Basically we were told that he would have brain damage if he wasn't operated on immediately. We were literally signing consent forms as we walked to the OR. The Neurosurgeon examined him and decided he needed to make an incision from his right ear to to top of his head. Then he would make a “window" in his skull. Then they would take out the abscess. The surgery would take 1-2 hours. After Zane's surgery started, the ENT Doctor came to us. He explained that when the neurosurgeon was finished they would go operate on him next. The CT also showed that all his sinus cavities were infected. He would have to go in and basically “rotor rooter” his sinus cavities.
When the neurosurgeon was finished he informed us that what he found was suprisingly not an infection, it was blood. He removed what he called “a life ending epidural hematoma." He said the surgery went very well.
The ENT said that his surgery also went well. When he went in the sinus cavity that goes above the eye was the worst and massively filled with puss. All his sinus cavities were infected. He removed the infection, removed damaged tissue, and made new holes for drainage since the original ones were swelled shut. Cultures were sent to the lab to help with his antibiotic treatment. Additionally, he has been evaluated by an ophthalmologist who was able to determine that his vision has not been compromised as well as a team of immunologists and hematologists.
Zane has spent 5 days in the ICU and will be in the hospital for at least a week after that. Tomorrow Zane will get a picc line (long term IV) that will stay in for at least a month for at home antibiotics. The infectious disease specialists will make the determination of how long he needs to be on antibiotics. He will also likely be on an anti-seizure medicine for a short period of time.
In true Zane style, the first sentence he said to me after his surgery was “Can I still go to Stubenville and Nationals?” Stubenville is a Catholic Youth Conference that he has been looking forward to all year. "Nationals" is the The Karate USA National Championships & USA Team Trials in Reno. Unfortunately he will not be doing anything for at least 3 months.
To summarize:
Zane contracted a terrible infection in his sinuses, likely so severe because of the medications he takes for his scleroderma that suppress his immune system. For some reason that no one understands, he also had some bleeding into his skull which did put some pressure on his brain, but his brain itself is fine and unaffected.
Once again, we ask for your love, thoughts and prayers. As we continue to get more information, we will keep you updated.
As we are still in a state of flux. Our family has had many requests for how people may help and the only thing besides prayers that we need right now is financial help if you are willing and able.
Please share this with anyone you think may want to know and would be willing to help and pray for Zane.
We really want to thank you for taking the time to review Zane's journey. We have to keep doing something.
Thank you again and God Bless.
Warmest Wishes,
Zane
and his parents
Christy & Josh
You may or not be aware that Zane has had a rough Spring. He was diagnosed with influenza in March and he just never seemed to get back to100%. He missed over 25 days of school from the time of his illness to the end of school in June. He battled a cold that seemed to keep coming back. He would occasionally still get low grade fevers, but none lasted more than a day so his rheumatologist was not concerned.
On June 29th, Zane complained of not feeling well after golf. He had been under the weather most of the week. He had a low fever that night. By the next day Zane was throwing up and said he thought he had a “migraine.” Although he never had one, he was familiar enough with them due to Wade’s(his brother) chronic ones. Just to be safe I made an appointment with his pediatrician first thing Monday morning.
By Sunday morning he had a worsening headache and began complaining of eye & jaw pain. Monday morning around 4am he awoke to his eye being swollen shut. We were in the pediatrician’s office by 10am. He was given 2 antibiotics shots. We were then advised that if his pain increased or if his symptoms didn't improve in the next 4-6 hours to go to Rady's Children's Hospital. He took a nap when we got home. When he woke up he was in tears from the pain. Those of you who know Zane know he is a tough kid. So I knew it was time to go. I packed a bag and we arrived at the hospital around 3pm. Fortunately only one person was ahead of him. He was given a large dose of pain medication while they ordered a CT of his eye area. The 2 hour wait for the CT was the longest part of our day. It was all a whirlwind after that.
15 minutes after we came down from CT he was moved to the room across from the main nursing station for closer monitoring. Before the nurse had him settled into the room, 3 doctors arrived all within seconds of each other: a Neurosurgeon, an Infectious disease doctor and the head of the Pediatric ICU. The CT showed a large abscess behind his right eye. The abscess was not only pushing out on his eye, but it appeared to be extending into his skull and therefore putting pressure on and displacing his brain. Basically we were told that he would have brain damage if he wasn't operated on immediately. We were literally signing consent forms as we walked to the OR. The Neurosurgeon examined him and decided he needed to make an incision from his right ear to to top of his head. Then he would make a “window" in his skull. Then they would take out the abscess. The surgery would take 1-2 hours. After Zane's surgery started, the ENT Doctor came to us. He explained that when the neurosurgeon was finished they would go operate on him next. The CT also showed that all his sinus cavities were infected. He would have to go in and basically “rotor rooter” his sinus cavities.
When the neurosurgeon was finished he informed us that what he found was suprisingly not an infection, it was blood. He removed what he called “a life ending epidural hematoma." He said the surgery went very well.
The ENT said that his surgery also went well. When he went in the sinus cavity that goes above the eye was the worst and massively filled with puss. All his sinus cavities were infected. He removed the infection, removed damaged tissue, and made new holes for drainage since the original ones were swelled shut. Cultures were sent to the lab to help with his antibiotic treatment. Additionally, he has been evaluated by an ophthalmologist who was able to determine that his vision has not been compromised as well as a team of immunologists and hematologists.
Zane has spent 5 days in the ICU and will be in the hospital for at least a week after that. Tomorrow Zane will get a picc line (long term IV) that will stay in for at least a month for at home antibiotics. The infectious disease specialists will make the determination of how long he needs to be on antibiotics. He will also likely be on an anti-seizure medicine for a short period of time.
In true Zane style, the first sentence he said to me after his surgery was “Can I still go to Stubenville and Nationals?” Stubenville is a Catholic Youth Conference that he has been looking forward to all year. "Nationals" is the The Karate USA National Championships & USA Team Trials in Reno. Unfortunately he will not be doing anything for at least 3 months.
To summarize:
Zane contracted a terrible infection in his sinuses, likely so severe because of the medications he takes for his scleroderma that suppress his immune system. For some reason that no one understands, he also had some bleeding into his skull which did put some pressure on his brain, but his brain itself is fine and unaffected.
Once again, we ask for your love, thoughts and prayers. As we continue to get more information, we will keep you updated.
As we are still in a state of flux. Our family has had many requests for how people may help and the only thing besides prayers that we need right now is financial help if you are willing and able.
Please share this with anyone you think may want to know and would be willing to help and pray for Zane.
We really want to thank you for taking the time to review Zane's journey. We have to keep doing something.
Thank you again and God Bless.
Warmest Wishes,
Zane
and his parents
Christy & Josh