Encephalitis Cases
Dylan
Dylan came home from school at 3:15 saying he had a bit of a headache. I asked him if he wanted Motrin for it and he said "no mommy I want to go out and play." November 28, 2006
Again Dylan came home from school saying he had a headache. Again he said no to the Motrin and went outside to play. Nothing more was said about it that day. November 29, 2006
I went into my son's bedroom at 6:45 a.m. to wake them up for school. Dylan was crying in his sleep. When he woke up he really started crying saying his head hurt really bad. I gave him some Motrin and told him to stay in bed while I got his brother ready for school. About 30 minutes later I went back into his room to find him still crying so I put his sneakers on and took him to midland medical walk in clinic. They took a sinus x-ray and blood. They told me his white count was slightly elevated and that he had a massive sinus infection. They gave him antibiotics, robitussin, and Motrin and told us we were all set, but if the pain got worse or he couldn't move his head to take him to the hospital not back there. He also had a fever. November 30, 2006
Dylan took his med's at 7:30 a.m.. After taking them he guzzled a bottle of water because he didn't like the taste of med's. Right after he drank the water he vomited clear liquid. I had to take my sister to the cancer center so I left Dylan with my mom and a list of the times he gets his med's. I left the house at 8:30 am with my sister she had 3 doctor's appointments and then Chemo I called several times throughout the day and my mom said Dylan was resting and he was OK. I returned home about 4:30 that afternoon and Dylan was watching cartoons and eating soup. After he was done eating he went to his room with his brother to play. I checked on him about every 20 minutes and he was fine, at 8:00 pm my husband came home from work and stopped in the boy's room to talk to them and check on Dylan at this point they were laying down and watching cartoons. He then came into the computer room and started talking to me. Within minutes Colin came running in telling us Dylan is throwing up. I rushed in the next room and he was lying down and had already stopped vomiting. I was talking to him telling him he's ok and that he will be fine. He didn't respond to me at all, I then stood up to talk to him and he was facing the wall. As I tried to turn his head to look at me I realized his head wouldn't move. He then started seizing. I called for my husband to call 911. He picked Dylan up and carried him downstairs to where my sister was (she was an LPN) my sister laid Dylan on the couch on his side and was calmly talking to him until he came out of it. That seizure lasted about 3-5 minutes. EMT's arrived and took Dylan out to the ambulance where they started an IV and gave him Tylenol because his fever spiked. We then went to Hasbro and were waiting in the E.R.when Dylan started seizing again. A nurse walked by and saw and immediately brought him into the trauma room. After about 15 minutes they got the seizure to stop. They took a lot of blood and did a lumbar puncture. They determined he had meningitis and they admitted him. December 1, 2006
Dylan was basically sleeping thru all of Thursday night. When he woke up that morning he was very mean toward everyone he talked to. They told me it was all part of the infection (meningitis) he had. That night a second shift nurse told me Dylan would not take his med's by mouth or rectally. Dylan hated med's. Dylan did not eat much of anything except soup. He basically stayed the same throughout the day and night except that he could not lay still; he was constantly moving around the bed but could not lift himself out of bed. Again he had a fever. December 2, 2006
I thought Dylan woke up a little improved today. But when I had gone outside to have a cigarette Charlie had called me to tell me Dylan was having another seizure. By the time I got back to the room it had stopped. About 10 minutes later he had another seizure that lasted about 20 minutes. Now Dylan was running a really high fever. December 3, 2006
Dylan woke up the same today, high fever, very rest-less. About 4:00 pm they were going to take him into RI hospital to do an MRI. They said they had to sedate him to do it. When they took him down for the MRI they found they could not do it because he would not lie still or go to sleep as he should have. Instead he was wide awake and singing at the top of his lungs. They brought him back to his room and said they would have to wait until tomorrow to do it now because they couldn't give him any more med's. About 6:30 that night Dylan stopped talking all together. He just lay in his bed very lethargic. December 4, 2006
Dylan woke up still not able to talk and he was moving all over the bed. They took him down for an MRI at Hasbro. When the results came back the doctors told us he now had encephalitis and the only hope was something called IVIG. They told us of all the risks of using this blood product but told us there was nothing else so we had to use it. They ran the IVIG thru his IV from 9:15 pm to 3:15 am one of us had to be awake during this to make sure he was OK while having it run thru the IV. They told us this was to be done for 2 nights in a row. Dylan threw up a little bit after the first round was thru him. December 5, 2006
That morning Dylan was still the same until around 11:00 am. I was walking back into the room and Dylan was sitting straight up in bed and kept saying hi hi hi hi over and over again. They had told us the day before there could be no interruptions while getting the ivig, it could not be stopped or it wouldn't work. About 4:00 pm Dylan stopped sitting up and talking and just laid in bed just staring. About 7:00 pm my friend came up to see Dylan. While there a nurse kept coming in and checking Dylan, she said he sounded "junky" in his breathing. About 15 minutes later I saw Dylan's arm twitching back and forth, I told the nurse and she put her hand on his arm and it stopped. I told her 2 or 3 times while Rose (my friend) was there and each time she told me it was nothing. She never told anyone else of what was going on and she also left at 9:00. By 9:15 Dylan's twitching was becoming more and more evident. A neurologist came in and by then his right foot was also twitching. She told us it was localized seizures, strictly on the right side of his body. By 9:30 he was having a full seizure. They ordered seizure med's. to be run thru IV (took over an hour to get to the room) after another hour of it running thru the IV it still wasn't working and he was still having seizures. They ordered another med to be pushed thru the IV needle. The IV had slipped from the vein and his bed was soaked with all the med's. Now everyone was in a panic. They got a new IV in and rushed him down to the ICU. All the while he was still seizing. When we got to the ICU they rushed him into a cubicle and wouldn't let us in. we called our friend Joann because I was a wreck. Joann came within 30 minutes and we still couldn't be with Dylan. As we were walking Joann to her car the actual nurse that was supposed to be caring for Dylan on the 5th floor came down to ICU crying telling us that the other nurse never told her what was going on with him. That's when we found out the nurse that wouldn't believe me that something was wrong was just a student nurse. About 11:20 they started the ivig, he was still upstairs on the 5th floor. But it was started 2 hours late and I kept telling them they had to get that med into him but they said not right now. The ivig ran for about 20 minutes before they shut it off to take him to ICU. They put Dylan on a ventilator and put an ICP monitor on his brain. While they were still trying to control the seizures the head of nursing at night came down and told us there was a huge investigation going on about the student nurse. Dylan wound up having seizures for 13 hours, he was in a coma now, partially from the drugs they were giving him and partially from the seizures. They had about 12-15 pumps going on him for all the med's. they put him on. Still has a high fever. December 6, 2006
No change in Dylan. Still has high fever. ICP rate is fluctuating high and low numbers. They hooked Dylan up to an EEG machine today to see the seizures coming. December 7, 2006
Fever still high, they had to use a cooling blanket to try to bring his temp down. ICP still going up and down a lot. December 8, 2006
Today the doctors decided to take Dylan out of the coma and take him off most of the med's. ICP kept pretty low which was very good. He did OK during the day and night while off most of the med's. December 9, 2006
Dylan did OK off the med's. for most of the day until that afternoon, and then everything went downhill for us. He was put back on all med's and back into the coma. Charlie and I stopped all visitations with Dylan in hopes of not getting him upset when he hears familiar voices. They found a large blood clot in Dylan's right leg where the central line was. Now he has to go on more med's to hopefully dissolve the clot for probably 6 months to a year. December 10, 2006
Dylan was back in the coma. Fever spiking and on all the pumps again. Everything is basically still the same right now. They want to do another MRI tomorrow. December 11, 2006
Dylan is still the same, ICP going up and down and so is the fever. Dylan's feet are starting to turn outward from not being able to move them; I asked what could be done because they said it may affect his walking later. They told me he needed a special boot for his feet but the hospital didn't have the right size for him and were going to have to order them. My sister went out and bought him high top sneakers because a nurse told us they would do until they got the boots in. I also went out and bought several pillows for Dylan so they could prop up his arms and legs into different positions so he wouldn't get sores and cramps in his body. I also bought several books on tapes and a portable CD player for his room so he was always having someone read to him. They did the MRI today, the results came back and 2 neurologists called me and Charlie into another room to tell us it was worse than the first one. We asked the 2 doctors if that was because of the 13 ½ hours of seizures, one doc said no and the other doc said absolutely. What are we to think? December 12, 2006
Dylan is still the same and they are still using the cooling blanket to help with the fever. ICP is a little better now. December 13, 2006
icp staying below 20 unless they move him to wash him up or to change the bedding for him, then it goes way up but comes right back down for them. December 14, 2006
Again Dylan is the same. icp staying good but fever is still there. A problem with his blood pressure also. Going up a little too high. Now (I think) on blood pressure meds too. December 15, 2006
Dylan doing the same or as the docs said he's doing a smidge better than yesterday. Talking about possibly weaning him off some meds tomorrow. December 16, 2006
Docs decided to wean him of a couple meds starting today, not taking him completely of them though. I believe they were reducing the amount of meds that were keeping him in a coma and paralyzed. December 17, 2006
So far so good on the weaning, he still has the fever but not as high. They are knocking down the dosage on 2 more meds for him. December 18, 2006
They are saying he is doing a smidge better each day. Lowering dosage on more meds. Just about down to antibiotic and IV fluids and 2 more meds. December 19, 2006
Still doing good all his vitals look good and no seizures at all. Talking about maybe taking the icp off him tomorrow. December 20, 2006
They decided Dylan's icp can come out. He is fully awake now and trying to talk to us!!! Mouthing the words I love you even though he is still on the vent. Recognized Joann when she came in and tried mouthing Seth (her son) so we thought he was on the road to recovery. Dylan stayed awake all day watching everyone walk by his bed and stop and talk to him. About 9:00 pm me and Charlie were going back to the Ronald mc Donald house to get some sleep and they were going to sedate him for the night. Tomorrow they were talking about taking him off the vent and going to show me how to bathe him with all the ivs in him. I was so excited. Hated not being able to take care of him. December 21, 2006
We got a phone call about 1:30 am saying that Dylan was having problems but we were not to come because they were giving him more meds to sedate him so he could go and have a ct scan or MRI, I don't remember which. They would call us when they got back to his room. About 4:30 am we got the call and we had to rush back to the hospital. When we got there they were putting the ICP back in. they said they may do a brain biopsy on him, and then changed to maybe putting a shunt in. By 7:30 am they were putting a second ICP monitor in him, we were waiting for the neuro surgeon to come talk to us. A couple hours later she did come and talk to us and said there would be no surgery for him. He is basically brain dead and wouldn't make it 24 hours. They told us that he had several strokes thru the night and a brain herniation on the right side of his brain. There was no hope now. We rushed back to his ICU room and stayed with him while all family and friends came to say goodbye to him. After goodbyes they were still taking blood and sticking him with needles, we couldn't take it anymore and told them to stop just leave him alone and let him go in peace. They took both icp's out and I crawled into bed with him as they shut the vent off. I lay with my son for 4 hours just holding him. Denise - Dylan's Mom
Rhode Island, U.S.A.
Posted: September 17, 2008
