And, looking back, I don't know how we made it except that God was with us, guarding us and shielding us! I had gotten to the last page of my prayer journal, so I had to put it away and buy a new one. I happened to look at the first few pages and was reminded that it was April 29, 2004 when my then 4yo son showed highly unusual symptoms of being very sick. It was only highly unusual for *him*, not really in general. On a Wednesday night, he seemed like he was coming down with something because he acted tired. But that was about it.
The next morning, he said he had a headache. His fever was mild, barely over 100. But, he slept a LOT. He woke up around lunch time, ate something, and then went right back to bed. Once again, he woke up around dinner time and ate something, went right back to bed. It looked like a typical flu. He wasn't throwing up and didn't have diarrhea. He also didn't seem to have a runny nose or congestion, either. His eyes looked glazed, and he looked like he had a headache (if that makes sense).
He did this again the whole next day. His fever never went above 101 and my pediatrician always told me to wait until 102 to give motrin. So, I don't think I gave him anything. Dh and I both agreed that he wasn't sick in the normal way, so we figured we'd take him to the Dr. the next day (saturday).
We took him to the Dr. saturday, and except for the fact that he looked miserable, he had no signs of congestion, cold symptoms, or throat infection. The Dr. said he probably had the flu. He didn't have strep (they checked). In fact, they said there was a 5-day virus going around, he'd probably be better by Monday.
Sunday, he acted the same, but Monday, he really perked up! He pretty much was back to his normal self. That evening, we had a meeting to attend and we took the boys. The only thing strange was that, my son walked slowly and he almost tripped (I was holding his hand and prevented his fall). But, he acted so chipper, I blew it off. We thought, he really must've had that 5 day virus!
Tuesday morning, we were surprised to find that our 4yo fell right back to his old symptoms! He slept so much! And his 3 naps during the day didn't affect his sleeping at night, either! We called the Dr's office that day, because he obviously didn't have the 5 day virus. The nurse told us, he probably just has a standard virus (there are tons of them) and to wait out the full 10 days. I told her, my son is sick in a different way. WHEN am I supposed to start worrying? She said, check back at the end of this weekend if he's not getting better. They were not too concerned because he was eating and drinking and his fevers were not major - when he got them, the motrin brought them down, easily.
Our 4yo was sick until Friday. On Friday, he had another great day. Except, that time, I took him to the store, and I noticed that he tripped over his feet, often. Also, he told me I was walking too fast.
The next day, Saturday, he slept a LOT, again! I felt so guilty because I'd taken him to the store the previous day. Sunday would make 10 days that he was sick. Monday, we took him in, again. This time, they decided to test for Lyme disease. Because the lyme tests take a while to get back, the Dr. went ahead and gave us amoxicillin (this is the treatment for lyme). She figured if the tests came back negative, we could always stop the treatment. Our 4yo didn't change one bit. On Wednesday, when we called for the test results, the Dr. said that the preliminary tests for Lyme came back positive. But, the definitive tests wouldn't be back for another day or so.
That week, we called every day to find out if it truly was Lyme disease or not. By Saturday, our son had not changed, he had his amoxicillin regularly, and we *still* hadn't gotten the definitive test results back. I also began telling the Dr. that he complained that his back hurt, and also his legs. We began counting the hours that he stayed *awake* and discovered he was sleeping 19 to 21 hours each day! The motrin was still doing a great job of keeping his fevers down - I gave that sporadically. When our pediatrician heard that his legs were hurting him, she began thinking it was something else, not lyme's. We found out on Saturday that neither the preliminary test nor the definitive test for lyme's was positive. The clinic had given us the WRONG answer for the prelims when the Dr. called in! Anyway, it had been 5 days of the amoxicillin and nothing had changed.
Sunday truly frightened us. Every time my son got up to go to the bathroom, he staggered! Then, as he'd go, he'd cry as if in extreme pain. I couldn't tell WHAT hurt him. Was it his legs while he was standing there or something inside while he was urinating? He was just acting like he couldn't walk. When he got up to eat, he needed help and he told me his legs really hurt. We took our son in that Monday for another exam. Our pediatrician was taking more bloodwork but she'd already scheduled an appointment with the rheumatologist in a university hospital near us. They thought he might have rheumatoid arthritis - it is rare in little children but it does happen. There's a certain kind of rheumatism that occurs in episodes - where the pain is accompanied with fever. She also told us to put him on a cycle of motrin and tylenol when needed. His fevers had begun inching up to 103 and 104. They still responded very well to the motrin, though. It didn't seem to do anything for his leg pains or his headaches. Every other day, he was telling us a different part of his body hurt. It was very scary to hear! After the Dr. examined him, she called the rheumatologist and told him some of the bloodwork figures. His white cell count was very high, so was his SED rate (indicates inflammation somewhere in the body). So, the rheumatologist told us to bring him in the next morning (tuesday), which was a BIG relief to us. We didn't want to wait until Thursday!
Tuesday morning, the Rheumatologist examined him. My son would keep his eyes closed, trying to sleep, as we waited. He was definitely in pain. It was painful to know your son was in pain and you couldn't do anything to relieve it! The rheumatologist determined that he did NOT have rheumatoid arthritis, so he went ahead and admitted him into the hospital to take more tests.
That afternoon, they gave him a room, but he didn't go in there until 7pm. He had gotten 2 bone scans, and something else.
For the next couple of days, he got quite a few tests - MRI's, CT scans, and spinal taps. He was sleepy through most of the tests, and a bit grouchy. After many Drs. came in and out making sure he didn't have different cancers and such, they determined that he had encephalitis, which is inflammation of the brain. It's not a disease, it's a condition. It was probably a virus (they believe West Nile) that caused the inflammation. Our infectious disease dr. told us if an adult had the amount of inflammation he had, they wouldn't even want to watch tv, they'd be in so much pain. My son was laying there watching tv, at that moment. THe inflammation was probably in the part of the brain that had to do with walking, that was why he was having difficulty walking. He'd need physical therapy but probably not occupational therapy (his fine motor skills didn't seem to be affected).
It was a relief to know *what* was the matter, but I had no idea until later, how dangerous encephalitis could be! The Dr. said, what was a good sign was that he wasn't in a coma. Most children they see with this condition are sleeping ALL the time, not like he did! That's what threw them off. There normally aren't spikes of being okay, like he had! Also, he obviously didn't have the kind where it's over in 10 days. It had been 3 weeks that he was sick, by this point. We heard much later, the stories of where people who had encephalitis were *still* going through therapy - some mental, some physical. When the brain is inflamed - you never know where the damage will occur! And we were assured sleeping a lot is good because sleeping is the only way for the brain to heal itself!
The funniest thing about my son was that, when the Drs. would come in, he wouldn't look at them! It was as if he thought "if I don't look at them, they don't exist." They'd try to talk to him, but he wouldn't say one word to them. I told them that he really did talk, but they were worried that the encephalitis messed up his speech because they NEVER heard him talk. Once the Drs. left, he would talk to us. There was a pediatric Dr. that came in who he did talk to. She told us the key was, she wasn't wearing a white lab coat! Which was true, she had her Dr. tag, but she was wearing a standard dress. She said all the pediatric Drs. there, don't wear their lab coats!
At the end of that week, the infectious disease Dr. thought we could take him home (he had a good day Friday, they thought he was turning the corner). But, that Saturday, he had his worst day. His fevers got pretty high (they were increasing every day), and then the mix of medicine and junk made him throw up. He had his headaches, again, and his legs hurt. His eyes began crossing too. At this point, he could no longer walk on his own, so we had to use a urinal, and I'd help him out of bed to do peepee. The infectious disease dr. decided he wasn't quite ready to go home. My son stayed at the hospital another 3 days, and then they decided to switch him to a children's rehabilitation center.
My dh and I took turns staying with him, overnight. It was nice because they had an extra cot in the room both at the hospital and the rehab center. At both places, though, it was a shared room. My son gradually got better at the rehab center. The first night we were there, I got him to walk halfway across the hall to go to the bathroom. He really did improve from all of his symptoms. It was really strange. We had the same feelings as when he was 11 mths old and took his first baby steps! He had to practice going up and down steps - his legs were very stiff. He still slept a lot, but this time, I didn't mind all of his sleeping. I kept on thinking "heal, brain, heal!" Most of his therapists NEVER got to do their sessions with him, due to his sleeping. So, at the end of 7 days at the rehab center, they agreed with us that he'd be fine recovering at home. He was increasing the number of hours he was awake, every day. What was actually quite crazy was that, we moved from our old house to the new one while our son was in the rehab center. On the day of our move, we had Grandma stay with our son in the rehab center, while dh and I packed up and moved half an hour north. We had so many people help us that we got done in 2 hours! It was the fastest move I'd ever seen! I didn't know what our son would think when he came home to a brand new house and room! It'd been 5 weeks from the first day he got sick.
He told us he liked his new room, though! He did develop a tic while he talked, but after a month it went away. He also needed to wear night diapers for about a week, but he got over that quickly. He only went to the physical therapist ONCE, and she said he'll recover quickly since he's so young and he WANTS to run and jump! It's easier for kids than adults to recover from encephalitis. There are 3000 cases of encephalitis in the entire US per year (not very common). Also, there were 55 cases of West Nile in my state the year my son had it. The infectious disease dr. at the huge university hospital that we had said she'd only had a few cases of children with encephalitis, and in all of those cases, the children were in comas. God truly was gracious to us!
One of the biggest things I learned, as a mom, was that only parents know when their child is acting unusual. Doctors only have statistics - some people act this way, some act another way. When you see a strangeness, it's okay for you to demand ALL the tests. The Drs. don't know your child like you do.
God was a shield around us during this time. He gave us so much peace. We had so many people praying for us - I know of at least 4 churches that prayed for us during this time. We don't have health insurance. But, we are a member of Samaritan Health Newsletter. It's a program where, unguaranteed, you submit your health need, and members of this program get assigned to your need for the month. It may take 2 months worth, but no more than that. Also, if every need cannot be covered, we are told how much can be covered. We were told we'd get 90% covered.
For some strange reason, I was NOT nervous about it. I guess I felt like, if we are $6000 in debt for the rest of our lives, who cares? My son was all better! Anyway, we told the hospital our situation and they insisted we had to pay them and they couldn't reduce the bill any more. We told Samaritan, and they contacted our hospital. They got our hospital to reduce the remaining bill by 10%! With that reduction, some churches giving us money, and some extra money dh made from a side job, the WHOLE bill got covered within the month it was due! Blessed be the Name of the Lord!
Every blessing You pour out, I turn back to praise
When the darkness closes in, Lord, still I will say
Blessed be the Name of the Lord! Blessed be Your Name!
Blessed be the Name of the Lord, blessed be Your glorious Name!
You give and take away, You give and take away
My heart will choose to say, more blessed be Your Name! Jesus!
