Wednesday 12/3/08

Jessica woke up at 9:30a.m. still sleepy and with a sore throat. But as the day went on, she did ok.

We had our scheduled telephone appointment with the Dallas CFS doctor. This appointment evidently was just to go over things, check in, review and see how things were progressing. It seems that we're doing all the right things at this point. We just have to keep doing what we're doing "for a while." Dr. S said we did a good thing by removing her tonsils even though there was a setback (because of the anesthesia and surgery). Tonsils are lymph nodes. The Epstein-Barr Virus (EBV) lives in lymph nodes, so the tonsillectomy "lowered her load," by removing a big portion of it and taking them out of her body. Dr. S discussed her thyroid medication. They can tell how the thyroid is doing by vital signs. If the body temperature, pulse and blood pressure are low, that means they may need to bump up the dose. (Jessica's body temperature has been consistently low the last 11 months.) She’s on a low dose of thyroid medication right now, not even up to the therapeutic dose yet, and so he is going to bump it up some. Her energy is not quite where we’d like to see it, and this should help, along with possibly helping with her focus/attention difficulties. He is going to send us a requisition for some lab work to check what was off or low on the lab results that were taken this summer. And our next appointment isn't for another 2 to 3 months. (That's good!)

Maybe her energy isn't quite where we'd like to see it or where it was, but she has been able to do more and we have seen improvement.

Thursday 10/30/08

Jessica said she feels "pretty normal" today, but then to clarify she said that is "my normal." In other words, she's getting over the tonsillectomy. Her pain seems to be better today, but I can also tell that she's some tired today. I'm thinking this is a CFS tired instead of a surgery or pain medicine tired though.

But the good news is that she got up off the couch and out of the house for the first time in almost 2 weeks. We sat outside on the front porch (it was a beautiful day!), and then I took her to see her horse. She knows her limits though, and we didn't stay but for a short visit.

A much better day!

Tuesday 10/28/08

A better day. Jessica's been able to eat some, been drinking, and sitting up watching tv and mostly playing on the laptop. She's still got some throat and ear pain, and has been on pain medicine still today and using the heat and cold compresses, but she's better! What a relief!

Hopefully we can even get school back in session again - maybe tomorrow.

Tonsillectomy Day 8 - 10/27/08

I've been sleeping on the cot next to Jessica for the past week since her tonsillectomy. Last night we were up several times - midnight, 12:30, 3:00 (Steve took over for a while), 5:30, etc... Jessica has been in so much pain. In tears. Feeling like there are knives in her ears. The doctor had us come back in for another IV with fluids and a steroid. He said her ears look good. The pain in her ears is referred pain. He says she has to drink. Force herself to drink even though it hurts. If she doesn't think she can drink (and I'm not sure if she can drink, at least not enough), he said he can put her in the hospital. But as we got back toward the house, she said she was hungry and wanted chicken nuggets. And she actually ate them. That's the first real food that she's had in a week! I hope this IV gets her over the hump.

Tonsillectomy Day 7 - 10/26/08

The morning started out rough, the same as yesterday - an extreme amount of pain, close to tears. Her ears seem to be hurting worse, but her throat's starting to hurt a little less. She slept or rested on the couch until late this afternoon, when she finally asked for some alphabet vegetable soup (or "can-o-happiness" as Matthew called it) to eat. Of course she didn't eat much, but she ate something. She's sitting up, and on the laptop right now. And I've seen a smile or two this evening. The little things are big these days. We need to find the good in whatever hand we've been dealt and learn to accept, adapt, and make the best of it. This past year has been a huge lifestyle change for us. Today Jessica said she was "wishing she could go somewhere besides her house." Most of this year has been spent inside our house, not getting out much. But we're adapting. When all she can do is go out in the backyard, the dogs and the sunshine are a great spirit lifter. When all she can do is lay on the couch inside, the bunny rabbit does the same and is a great companion. We accept and make the best of what we have. When life gives you lemons, make lemonade! Or a can-o-happiness.

We heard the best sound in the world tonight - Jessica's laughter! One of the highlights of our day was when Jessica rang her bell (to call me in when she needs something) to show me that she'd found the letters and spelled out her name in her alphabet soup!

Appreciate the little things...

Tonsillectomy Day 5 & 6 - 10/24-25/08

Friday Jessica slept most of the morning and her ears were hurting - the nurse had told us that she would have referred pain in her ears. But in the afternoon, she wasn't too bad. She actually ate! Some vegetable soup and a few sips of milkshake. So that's good news! And she got off the couch! She wanted to go be with Matthew in his room while he played Playstation. (I am very lucky in that my kids get along so well and actually like being together.) So, not as bad of a day. But, as usual, by 5:00p.m. the pain's worse and she feels worse, but held out without pain medicine until bedtime.

Today though, her pain up to her ears is hurting so bad (along with a headache) that she can't open her mouth. She's hungry, and asked for a milkshake, but can't seem to open her mouth to drink it. We'll try again later.

I know the doctor said it would be the worst sore throat that you'd ever had... for 10 days. But I guess we didn't realize it would be this bad. She said she's "hoping this junk will hurry up and be over with." I am too Babydoll! We all are!

Tonsillectomy Day 4 - 10/23/08

Jessica is smiling! And... talking!! :) No more white board! And she's asking for McDonald's sweet tea. She says she's so-so and she's still laying down and sleeping, but I think we're turning the corner on this.

Tonsillectomy Day 3 - 10/22/08

Jessica's had a lot of pain and not drinking like she needs to because she can't seem to do it. She also is finding it hard to breathe and swallow, which evidently is from the normal healing process. She slept most all day yesterday except to wake up to take a sip of water or suck on a piece of ice.

I went to work this morning while Steve stayed home. When I got home he said she wasn't doing well. She hadn't drank much of anything at all. She wasn't drinking like they said she has to. So we called the doctor's office. The doctor himself even called us back. And they had us come back in for an IV of fluids. They said she was getting dehydrated but not too much yet. After the IV, we got her to drink some, and she's drank a little milkshake since we got back home. If she can't keep drinking, they said she'd have to go to the hospital, but we want to avoid that.

She does look better than she did before the IV. She's still hurting and not opening her mouth, but is more awake and has more color.

Tonsillectomy - The First Night

By 6:00p.m. the day of surgery, Jessica's throat was hurting severely, to the point that she didn't want to open her mouth or swallow her own spit. There were tears, and it's so hard to see her in so much pain! She wouldn't try to talk, but wrote us notes on her white board instead. It hurt extremely bad to even sip water, and the doctors have stressed that she must keep fluids going to keep her throat moist, or she could be making another trip back to the operating room and starting over. It was a long hard night for her and we didn't get much sleep. And it seems that we may have several more days of this.

Tonsillectomy 10/20/08

Well, it went well. And all the staff at the surgery center were very nice. They answered all my questions, even when I asked more than once! And relieved my fears about surgery in her situation. We had her magnesium and potassium levels checked at the end of last week before the surgery. Her potassium was normal at 4.4 with a normal range of 3.4-4.71, but her magnesium was still slightly low (even though she's taking 400 mgs a day) at 1.6 with a normal range of 1.7-2.4. So they had assured me that she would be ok.

The doctor said her tonsils were badly infected, and took out her adnoids also. I was pleasantly surprised at how well Jessica came out of the anesthesia. And no nausea. When we got back to recovery, she was sitting up in her bed talking and drinking, and it wasn't long until they said she could get dressed. So, with a surgery time of after 8:30, we were home by 11:00! She's on the couch resting now. Kind of tired and her throat hurting, but better than I'd thought she'd be!

Praise God! And also for the fact that my weekend long migraine subsided in time.

Tuesday 9/30/08

Besides a bad sore throat, Jessica was pretty good for most of the day today. She was joking and in a good mood!

We met with the ENT doctor about Jessica's tonsils today. He said she has big pits in her tonsils with tonsilloliths. He said she could gargle with salt water daily and use a Waterpik a couple times a day, but from what he's seen that usually doesn't do it. It would do her good to get her tonsils out. The frustrating part is that this seemed to be one of the doctors that doesn't believe in CFS. After giving him her medicine list and some literature showing the precautions of CFS and surgery, he decided he would get a copy of her medical records first before setting up the surgery. It's an outpatient surgery, and he said she would have the worst sore throat she's ever had for 10 days. Hopefully it will help with at least the sore throats after that though.

Monday 9/22/08

Jessica didn't feel well today, and was either in bed or on the couch all day. Her legs were weak, she was tired, and just didn't feel good. She's ready to get a homebound teacher instead of trying to go to school and missing. She doesn't like missing school.

At 10:30a.m. she was still in bed, but I got her up to take her to the doctor. This time to our family doctor for the congestion and ear ache. She has fluid on her ear, but also, she has a "huge" tonsillar crypt abscess. (She's had puss pockets frequently.) The doctor recommends that her tonsils should be removed. At our pcp's suggestion, we ran it by her Dallas CFS doctor who said it was "not a good sign" that she has an abscess while on an antibiotic and a tonsillectomy may help her significantly by avoiding future infections, but also could cause a setback because of the surgery and anesthesia. He was ok with going ahead with it. This is a big decision.