Encephalitis Cases
Christian
Christian was born on April 17th, 2002 - a normal, healthy little boy. On May 9th, my daughter called the doctor's answering service because Christian was running a fever of 100.6 and had been running a low-grade temperature since May 6th below 100.3. She was told to bring baby Christian to the emergency room at Vanderbilt Hospital - since he was just 4 weeks old. We got to the emergency room on May 6th, and the doctors did blood work, urine, and a spinal tap and admitted the baby into the hospital. Christian was started on antibiotics and fluids because he was somewhat dehydrated. They were only able to extract a very small amount of fluid from the spinal tap after 3 attempts, and it was bloody, but they felt like they had enough to test for any cultures.
Christian continued to run a temperature consistently, by Saturday he had become less active, fretful, and his eyes were crossing over to one side and shaking. We reported this to the nursing staff. On Sunday, he was released because all tests came back for any bacterial as negative, although he was still running a temperature and seemed worse. He was just not looking well at all, but we were told he probably just had a viral infection that would take about 10 days to run its course. So we left the hospital at noon on May 12th.
Well, Christian just progressively got worse as the evening wore on, becoming more and more lethargic, his mouth drooping, salivating, could not focus his eyes, vomiting and not eating. My daughter called his pediatrician, and he said bring him immediately to the emergency room at Vanderbilt Hospital and they would be waiting for him. We rushed to get there. Things progressively got worse, Christian's body went into total shock, he was having Gran Mal Seizures, stopped breathing, and his heart rate was at 218 beats per minute, etc. They put him on life support, worked on him for hours to get him stable. They did blood work, urine test, spinal tap, CT Scans, etc. In an hour they new he had spinal meningitis.
After 5 and a half hours of working on him in ER, they had him stable enough to move him to PICU. 48 hours later we were told he also had HERPES SIMPLEX ENCEPHALITIS. Christian was critically ill and we had already been told to call the family in. They did not think he was going to live. An MRI and an EEG was done and showed he had extensive brain damage mainly on his right side of his brain. He was still in a coma.
On Thursday they took him off of life support, and he continued to breathe on his own and stayed stable. Within 24 hours he was moved to a private step down room. For 3 days he was very stable, on the fourth day - May 21st, Christian started throwing up really bad, extremely fretful, and became lethargic again - we told several medical staff members. The next day he was even worse. He was taken for a CAT Scan, within 5 minutes, we had about 20 doctors and nurses enter his room with the crash cart and portable oxygen tank and they took him away back to PICU. We were told someone would be back to meet with the family in a few minutes.
Well, what had happened, Christian had had a massive stroke on the left side of his brain. We were told to call any family members in, and a decision would have to be made within the next 30 to 60 minutes to put him on full life support. We called all the family in, then the family was called in a room and doctors from PICU, Neuro, Infectious disease, and etc, met with us and showed us the CT Scans and explained what had happened to Christian. Layman terms - his left side of his brain had melted, and his entire brain was under so much pressure from fluid and swelling. There was nothing medically they could do, no surgery - like remove half of brain, putting in a shunt was not an option. We were told the bleeding in his brain was extensive and on and on, with many more complications. He was given three blood transfusions during his stay.
Christian continued to breathe on his own, his heart rate would go up in the 200's and his blood pressure stay high- sometimes going as high as 136 over 79 over the course of the next 5 to 6 days. The doctors felt he was stable enough to be back on the step-down floor. On June 11th, we were able to bring Christian home; he had finished his 21 days of ACYCLOVIR. He continues to be on PHENOBARBITAL for his seizures and iron. We had to take him back to the emergency room on June 15th, he was running 101.3 temp again, they ran all the blood work, urine tests again and another spinal tap. As of Monday nothing came back positive to determine why he was running a fever.
Christian weighs 8 lbs. and 7 oz. He weighed 5 lbs. 8 ounces when he was born. His mother had a hard pregnancy, she went into premature labor at 24 weeks, 26 weeks, and 32 weeks, and at 37 weeks they had to induce because she had developed HELP syndrome - very sick. Then they both got a staff infection within the next week.
It is very sad that so much has happened, but by a miracle Christian is still with us for a reason that only God knows why. We do not know what Christian's future will be, what his life expectancy will be, what his disabilities will be, because according the doctors he is not supposed to be here now. Then we were told if he did survive, he will not live past his 1st birthday, and that he will not see, hear, speak, communicate, set-up, crawl, or walk. We have faith, and we will take one day at a time and keep our hope positive.
We would love to hear from other parents who have had similar experiences, this is such a rare disease. Thank you. Please feel free to contact us.
Chris
Nashville, TN. U.S.A.
Posted: June 30, 2002
