Wednesday, April 30, 2008

Wednesday 4/30/08

We tried to get Jessica up this morning for a while. Her eyes didn't open and she wouldn't wake up. She was limp, but I sat her up on the side of the bed, and tried to get her up. But she ended up in tears, and I put her back in bed. My mom came and stayed with her, and said she looks like life has been taken out of her, like she's drained.

I called doctors' offices all over today.

  • I called my headache clinic, because I had been referred there from a message board, but I was told that wouldn't deal with this - only headaches.
  • I called the Diagnostic Clinic and asked if the rhuematologists there could take her, but I was told that they don't take anyone under 18.
  • I called her old pediatric clinic, but was told that they would just refer us to the Children's Hospital.
  • I called the hospital and asked for suggestions. They referred me back to my primary care doctor who they said should be able to refer me to the correct clinic.
  • So I called the Infectious Disease clinic again and talked to the doctor. Her suggestions were 1)counselling to learn to deal with stress. (Jessica said "I don't have any stress.") 2)The Pain Clinic evidently is the closest thing to dealing with fatigue here in Arkansas. 3)Or there are fatigue centers around the country, but not in Arkansas, and she's supposed to check to see if there is one in Memphis. (That would be nice!) 4)Or she mentioned a couple of rhuematologists at the Children's Hospital. I asked if we could get in sooner than the appointment we had with another rhuematologist on June 5th. And this afternoon I got a call back with an appointment this coming Monday! We're going!

I also called about homebound teaching today, and found out that she can't go to school on her good days if we choose homebound. We have to get a form from the doctor with a diagnosis (which we don't have yet) and stating that he thinks she should be out for the rest of the year. So, I've got to see if we can get this done.

Jessica made it to her last class, and seems to be doing fairly well this afternoon.

Tuesday, April 29, 2008

Tuesday 4/29/08

We tried for a while to get Jessica up this morning, but ended up leaving her in bed. She was completely out of it, and didn't feel well. My dad came over and stayed with her. She said she was tired but not as bad as yesterday. She napped for a while, and then made it to her last class.

I talked to the counselor today to get the name of the person that handles homebound teaching...

Monday, April 28, 2008

Monday 4/28/08

It took about 15 minutes or so to get Jessica up this morning. She didn't feel well - sore throat, tired, etc. - and tried to get ready, but ended up back in bed. Her fingers were somewhat swollen and hurting, and later today she's said her arms and legs felt sore. It was hard leaving her to go to work. My mom came over to stay with her, and said she looked the worst she's ever seen her.

I got a text message from Jessica late this afternoon saying "Im sorry that i couldnt make it to school but i am just so tired. Im also sorry that my grades arent good but i am having to pretty much teach myself and i cant really remember anything either."

I asked for a leave of absence from my job today...

Jessica did eat good today. Everyone's asked if she's eating. It varies from day to day. Some days not much. Today she ate good! Today she ate a small slice of cheese danish for breakfast, and some toast when my mom got here, a baked potato and brownie for lunch, and then when I got home at 3:30 she wanted a grilled cheese sandwich and brownie, and then she wanted 2 more grilled cheese sandwiches, and then she ate a roast beef sandwich for dinner. And to drink: apple juice, root beer, Sunny D, coke, and gatorade.

Sunday, April 27, 2008

Sunday 4/27/08

Today was not very good. Jessica's throat hurt all day, she just felt yucky, and she was tired. I'm not sure that she napped during the day, but she would've liked to have. We had company come over for lunch, and she pretended to be ok but just sat in her big chair and ate and visited some. While our church group went bowling, she stayed home, got in her jammies at 2:00p.m. and rested the rest of the day.

Also we noticed this morning that her toes were blue, from the joint to the ends of the toes on both feet. I'm not sure what that means.

Saturday, April 26, 2008

Saturday 4/26/08

Today was a good day! Jessica said she didn't sleep well last night, but has felt ok for the most part today. She got her hair trimmed at the salon this morning, and late this afternoon we all went to see Mia, and she rode her. It was a beautiful day today.

Friday, April 25, 2008

Friday 4/25/08

We tried to get Jessica up this morning, but couldn't. So she stayed in bed. I asked her if she would be ok if I went to work. Then I put my ear to her mouth and made her repeat her attempt to say "yes" about 6 times until I could finally hear it. Our parents were all out of town today, so she was on her own. I got a text message from her saying Olson (one of our dogs) was barking at the reflection and woke her up. So I called to see how she was doing. She sounded awful! She was tired and her throat hurt. She was moving to another room away from the dogs and going back to sleep. I checked on her throughout the day. When I talked to her at 1:50, I couldn't stand it anymore and went home an hour early. She hadn't felt good all day and didn't make it to school. That's day 40 of this semester that she's missed. She asked me to stop and get her something to eat because she hadn't been up to fixing herself anything. I cried on the way home. She was hungry and ate when I got there, but then her eyes were closing. She took another nap. She's since been up and watching Alvin & The Chipmunks movie with us (cute movie!), and it's bedtime again.

Thursday, April 24, 2008

Thursday 4/24/08

It took us a lot of work to get Jessica up this morning. She was completely out of it. We were trying to get her to open her eyes and stand up while she was still a rag doll. But, she made it to school on time. She was supposed to have had a Civics test in her first class.

At 9:30a.m. I got a message from her asking "Can Granddaddy come get me? I feel horrible." She had a bad headache and was tired. My dad said she came in and went straight to bed. He stayed till she woke up and then fed her lunch. She probably slept an hour this morning, ate lunch, then went back to bed and slept another 2 hours. And is still tired.

Wednesday, April 23, 2008

Wednesday 4/23/08

After a few tries, we got Jessica up and to school. She was tired. I got a message from her at 9:30a.m. asking if she could be picked up at lunch because she was "really tired." My parents got her around 11:30, 20 minutes after lunch had started, so her time at home was shortened some today. She may have slept an hour, but still tired and debated whether to go back to school or not, but did make it back for her last class.

Added at 9:00: Jessica went to bed at 8:00, her usual bedtime lately. At 9:00 I heard her bedroom door open, and started asking her what she needed, but she didn't answer. She got halfway down the stairs and almost within sight when we heard a thud. She had slid down to sitting on the stairs, pretty much asleep, and didn't know why she was up. She said she was going to get "something." I reminded her that she has a phone beside her bed to call me instead of getting up, and we put her back to bed. Sleepwalking! So, we put couch cushions at the bottom of the stairs for the night.

Tuesday, April 22, 2008

Tuesday 4/22/08

I took Jessica to get the ultrasound on her thyroid today. It seems that it was normal.

Then we had an appointment with the doctor because she'd been complaining that her ears were hurting. It's from all this allergy stuff, congestion, etc. I wanted him to check her ears. Her ears were fine, but her throat looked bad. So he gave her some medicine.

As far as the other that's going on with her, he's been researching. He found a doctor in Texas (Dallas area I believe) that evidently specializes in Epstein Barr and fatigue. He suggested we try to contact him. He also said that he has two other patients that have had Epstein Barr - and they aren't getting any better either! He'd mentioned this Texas doctor to his other patients and they'd already contacted him, and one lady said she'd already taken her husband down to see him. Other than that, everyone's just baffled and frustrated.

The appointment with the rhuematologist isn't until June 5th. So, I guess we just keep doing what we're doing for now.

Jessica was tired, and didn't go back to school, or didn't go to school at all today. She took two naps, one for about 30 minutes before our doctors visits, and one for a little over an hour this afternoon.

Monday, April 21, 2008

Monday 4/21/08

It took a little while to get Jessica up this morning, but she made it to school. She was complaining of a headache, sore throat, ear ache (sinus), and tired, so my dad picked her up at lunch. She slept for an hour nap, and then went back to school.

Sunday, April 20, 2008

Sunday 4/20/08

Jessica's been average today. She has seemed and says she is a "little tired," and has a bad headache. We've just stayed around the house today doing nothing.

Saturday, April 19, 2008

Saturday 4/19/08

Today was a pretty good day. Jessica has seemed to have felt ok today. We stayed in for the most part. Steve took the kids to see Mia late this afternoon. While Steve was busy visiting with the other adults and helping them, Jessica picked out Mia's feet. She rode her, but otherwise was to take it easy. Jessica may be a little tired, but has done ok today.

Friday, April 18, 2008

Friday 4/18/08

Not a good day. Jessica got up, got ready, but didn't feel well. She & Steve took the computerized baby back to school so she could come back home and rest quietly. She slept for 2-1/2 hours. She was still tired and not feeling well (tired, headache, sore throat), but made it to her last class for her science test. When I picked her up she said she felt run down and worn out. She was breathing heavy. She seems to be really tired.

At least it's the weekend!

The doctor's office called and wants her to come in on Tuesday morning at 10:00 for an ultrasound on her thyroid. And we're supposed to hear from Baptist Health scheduling for the appointment with the rhuematologist.

Thursday, April 17, 2008

Thursday 4/17/08

It took about 13 minutes to get Jessica up this morning, so that was an improvement. She made it all day at school, but is tired. She doesn't feel real good tonight (tired, headache, & sore throat), and has been wanting to take a nap, but had to study for a test first. She's about to go to bed.

She brought home a RealCare (computerized) baby for her Home Ec class. Most of the kids kept theirs for 3 or 4 days, but the teacher has offered for Jessica to just have hers for 24 hours. She's going to return it after school tomorrow. Steve & I are babysitting it tonight during the night since Jessica needs her sleep. We can't let it cry, and it seems to be a cry-baby!

Wednesday, April 16, 2008

Wednesday 4/16/08

We had trouble waking Jessica up this morning, but after probably 45 minutes, she got up. She said she didn't sleep well last night. She got to school about 9:00a.m. She had a heachache during the day, but made it through the rest of the school day. She said her first block teacher said she looked like she didn't feel good, and she almost fell asleep in her last class. She's tired, but working on homework that needs to get done.

Added at 8:33p.m.: Jessica complained of a sharp pain at her hairline above and to the left of her left eye, not a normal headache. She's in bed with the heating pad. She says she can't breathe; she's having to breathe deep.

Tuesday, April 15, 2008

Tuesday 4/15/08

We couldn’t get Jessica up this morning. I tried. Steve tried. We turned on the tv. She doesn’t move. After trying hard, I can get one word answers from her, but her mouth doesn’t move and I have to put my ear to her mouth to hear and understand what she is trying to say. I asked if she needed anything, and I heard “water.” But of course she didn’t drink any, because she didn’t move and didn’t open her eyes once. In Steve’s words, she’s like a “zombie.” Almost non-responsive. Completely out of it.

My mom came to be with her, and said she looked like “she’d been sent for and couldn’t come.” She made it to school at 1:00, in time for her last class. She's tired.

This afternoon Jessica asked me if we tried to wake her up this morning.

Monday, April 14, 2008

Monday 4/14/08

I drug Jessica out of bed this morning to get her to school. It was said that she just needs to make herself get up and go, but no one understands how unresponsive and completely out of it she is. I talked to her, rubbed her back, shook her...then I turned on the tv (loudly) and the light and left the room for 10 minutes...came back and pulled her over, which wakes her up enough to get her upset. I finally got her up and to school. So, since we could tell this wasn't a good day, we planned for my dad to come pick her up at lunch to rest during lunch and dance. When he got her, she had a bad heacache and was dragging. She ate and went to bed. She set an alarm to wake her up from her nap. I got a text from her when she woke up saying she was still so exhausted. She said she could fall back asleep. So, she didn't make it back to school today. She went to bed at 8:00 last night, and today she slept from 11:40 until 3:10.

The doctor is planning and responded today with:
1. Setting her up with Rheumatology. They will be able to look thoroughly into all the arthritic conditions including chronic fatigue syndrome.
2. Scheduling her for a thyroid us test.
3. He also mentioned sending us a depression inventory, but doesn't think she is depressed. She has been sick a long time and with long term illness, teenagers get depression with there illness 85% of the time. [She's not depressed!]
4. Her potassium was fine, and she has not had her B12 tested, but we can check it the next time we're in the doctor's office.
5. EBV symptoms can last for several months and from literature even longer.

Sunday, April 13, 2008

Sunday 4/13/08

We let Jessica sleep in this morning when we went to church. When I talked to her between church and Sunday School she said she felt ok. April, one of the youth teacher/interns, asked me what Jessica was doing this afternoon. The youth group was going to the park from 2:00 to 4:00, and she wanted to know if Jessica wanted to go and could ride with her. Since Jessica has signed up for the youth group trip this summer, it would be nice if she spent time with the youth first, and since she said she was feeling ok today, and since they weren't climbing the mountain at the park, we let her go. The girls did walk the trail, and they just sat and visited. But, now she's not feeling good - headache, really tired, and just not feeling good.

Saturday, April 12, 2008

Saturday 4/12/08

A pretty good day today. Stayed around the house most of the day, but then Jessica and I were able to go see Mia in the late afternoon. I picked out her feet and did all the grooming. Jessica just stood or sat on the barrels while playing with and watching Mia in the arena. She's tired and in bed, but had a better day.

Friday, April 11, 2008

Friday 4/11/08

Jessica has had a really bad week! I'm worried. So, I'm online looking at an epstein barr message board, where I see others saying their symptoms are lasting years. While I was waiting to hear the lab results from our primary care doctor, I called the clinic that we went to at Children's Hospital to let them know how she was doing and see what they said. When the nurse there called me back, she was not very nice, and I got off the phone so upset! She said "what do you want us to do? her epstein barr (ebv) test results came back negative; you can go to your primary care doctor to check for other things, and even if it was positive there isn't any medicine that we could give her." Then the nurse at our primary care called me to say that this set of lab tests showed that she had an "old [ebv] virus" so that means she should be better according to the lab. But our doctor also said that the results didn't correspond with the way she was feeling when she came into his office. He's supposed to call us this weekend. I think the doctors, everyone is baffled. Some have asked if she's depressed, if there's anything going on at school, if this is psychosomatic. That is so not Jessica! What I'm reading online looks like the symptoms can continue for a long time. Tonight when I put Jessica to bed she said "someone needs to go pick out Mia's feet." I asked if that meant she didn't feel like going, and she said she didn't really feel up to it. Ya know she doesn't feel good if she doesn't want to go see her horse. My stomach's been upset for the past few days, and I know it's because I'm worried about Jessica. Luckily today the kids were out of school for parent/teacher conferences, so she slept this afternoon, and Matthew took care of her.

She did make it through the day at school yesterday by pushing herself. She wanted to be picked up at lunch, but still had to finish a standardized test after lunch. They had started it in the morning, but had tornado sirens going off and had to sit in tornado drills for about 1-1/2 hours.

Wednesday, April 9, 2008

Wednesday 4/9/08

I couldn't get Jessica up this morning, so I was going to leave her in bed. But when I went back up to check on her right before I left, she said she didn't want to stay home; she wanted to go to school. Of course her eyes were still closed, and she hadn't moved. I had been having to put my ear to her mouth to hear her. She also said she was having trouble breathing or getting enough air in her lungs. I fixed her some toast for breakfast. She was moving slow, but she did get up and my dad got her to school at 11:00. She seems better now. I just emailed our doctor. He asked me to remind him today to check for her lab results. So hopefully I'll hear something soon.

Tuesday, April 8, 2008

Tuesday 4/8/08

Again this morning I couldn't get Jessica out of bed. Steve couldn't either. So I left her in bed. She texted me at 9:15 - had just woken up. But she didn't get up except to eat. Otherwise she stayed in bed most all day, worn out. I thought we were past this! So, I took her back to the doctor this afternoon. He did lab work, wanted to check everything to make sure there isn't something else going on too - mentioned the arthritis family - and told me not to worry, that that's his job. Her white blood cell count was normal, so that was good. But I should hear about some of the rest of it tomorrow.

My dad came over today to check on Jessica and bring her lunch. Then he took our rabbit to the vet and then brought him back this evening. My mom said that she's keeping tabs, keeping a list for when she gets older and needs help. I needed a clone today otherwise!

Monday, April 7, 2008

Monday 4/7/08

I struggled to get Jessica out of bed this morning. I literally sat her up myself, and tried to get her up, until she cried. I hate that! She didn't feel good, and only got to school this morning because I pushed, but the doctor had said she needed to make herself go. But then my dad had to go get her at 1:00 and take her home. She was exhausted and had a headache. She was asleep when we got home, and still is.

Tuesday, April 1, 2008

Tuesday 4/1/08

We couldn't get Jessica out of bed this morning. She wasn't doing good - sore throat and exhausted. I couldn't get her to budge. She was like a rag doll. She did make it to her last class, which was her science test.

Jessica was too out of it to push herself this morning. It is hard to know how much to do or not do though. And on the good days, it's hard to know when to stop and rest or to take advantage of the fact that she's feeling good.

She's says she's some tired now, but she seems better! I was just hoping this was over.