Jordan's JDMS Diary

May 1999

Saturday- May 1
Today we had to hunt for Jordan a dress to wear to a bridal shower tomorrow. It was hard to find anything with sleeves. All the summer dresses are out and they all have spagetti straps. Jordans Singles rash looks so bad that she had to wear a sweater over the dress we found to cover it up. It doesn't hurt anymore, but doesn't seem to be going away.

Saturday - May 8
We went to Temple for Mother's day. One of my brothers and as well as my sister made it too. This excites Jordan because of all the little kids. She had a great time. The went swimming, watch movies and stayed up late. We enjoyed visiting everyone.
HAPPY MOTHER'S DAY EVERYONE!

Wednesday - May 12
We picked Jordan up early from school. The nurse called to say that she had a slight fever and wasnt feeling well. I think the rash is getting worse. She scratches it at night in her sleep. Seems like as soon as it scabs over she scratches it and makes it worse.

Thursday - May 13
HAPPY BIRTHDAY JOEY! WE LOVE YOU SON!!!
Jordan had a school choir program at 6:30, so we postponed having a party for him until the weekend. He and Tammy went to Austin for the evening.
Jordan was really excited about her program. She had to speak about 3 times between songs. She got nervous and forgot when she was suppose to go up to the microphone. Some of the other kids tried to tell her to go to another position and embarrassed her. She felt really bad after it was over. We think she did wonderfully. During the program, I was remembering last years. At one point, my eyes filled with tears thinking about her (last year) not being able to put her little arms up or bow afterwards. She did beautifully this year. I was so very proud of her. She is so precious to us.

Tuesday - May 18
We had to pick Jordan up again today. Her rash is really bothering her. We took her to our family doctor and he prescribed Silver Sulfadiazine cream. It almost looks like a bad burn now. With the slight fever, he felt like it was getting infected. He also prescribed an antibiotic. I hope this goes away soon. She isnt sleeping well at night. We've been getting up all hours to try to comfort her. Sometimes we give her tylenol with codine, benadryl, or a cold compress. What ever we can to soothe the itching. We go back to Dr. C on Monday. I hope its better by then or he can give us something to help her.

Wednesday - May 19
I stayed home with Jordan today. Dr. L said to keep her shirt off in hopes that it will heal faster. To keep her mind occupied, we sorted through keepsakes and pictures. Throughout the year, I put all their awards and memorabilia in a big box to later separate and place in albums. It would probably be easier it I put them in albums immediately, but usually time doesnt allow it. Naturally, Jordan wants to inspect every little thing as we sort, so it took awhile to get it done. She didnt complain much until we finished. She played on the pc a while and made a few Barbie pages for her cousins. She headed to shower about 8:00. She wanted to put the cream on her again and bandaged it for tonight so she wont scartch in her sleep. The Silver Sulfa cream seems to help the healing process. But the bandages didn't work. It was only a matter of minutes and she was pulling it off. Her skin is so sensitive, the slightest touch aggravates it.

Saturday - May 22
We intended on going to my nephew's girlfriends graduation today, but Jordan is getting worse. We've spent most nights awake trying to comfort her and Thursday and Friday were the worst. She finally felt asleep between 4:00 and 5:00 a.m. and not because of relief, but simply exhaustion. She's had a temperature of 101 on and off over the last few days. We've been giving her Tylenol with and without codine, Benadryl and Clarilin to try to gie her some relief. I can hardly wait until Monday to see Dr. C again.
Monday - May 24
We told Dr. C about her temp and that the rash seems to be spreading and the pain continues. He definitely thought the rash looked worse. In fact, he felt that she was getting a fungus type rash on top of the shingles. We were told to discontinue the Benadryl and Claritin but to continue with the Tylenol. He prescribed Nizoral to treat the fungus, Amitriptyline for the chronic pain and ordered a large supply of the Silver Sulfa. He also prescribed Neurontin. This is usually used to treat seizures but his hopes are to calm the nerve that is affected by the shingles. He also was going to order an addition supply of the antibiotic Dr. L had prescribed.
By the time we picked up the prescriptions, we noticed that he had failed to give one for an antibiotic. She still had a few left from Dr. L's so, I was going to call him in the morning.
By 8:45 Jordan's temp was 103.2. I immediately gave her more Tylenol, placed a cold compress on her forehead and put a call in to Dr. C. He returned the call immediately and said to take her to ER for an examination.
We arrived by 9:20, we were being checked by an ER technician. Her temp was 102.6. It was coming down, but not fast enough for us. The ER was very busy so we didnt actually see a Dr until about 10:15. He order a blood sample for a culture and checked her urine. The culture would take an hour. I asked about Pneumonia. I've been concerned about her not wearing clothes and she's been coughing some at night. I wasn't sure of the symptoms of Pneumonia, but had read the seriousness when connected with JDMS patients. The Dr said he could ususally hear Pneumonia but would be glad to order a chest xray if I wanted one. Naturally, I did. Sure enough, she has developed Pneumonia. Fortunately, we have caught it early. He precribed Augmentin tablets 3 times a day. Before leaving, her temp was 100.9.
We made it home about 2:00. Throughout the night, I checked her temp and it finally came down about 4:00.
She is now on the following drugs daily: 100 mg of Immuran, 300 mg 3 times a day of Neurontin, 200mg of Nizoral, 250mg 3 times a day of Augmentin, and 10mg Amitriptyline at bedtime. She takes 5mg of Paxil, 1mg of Folic Acid, 2 tablets of Pepcid, 2 tablets of Tums, and 1 multi-vitamin. Once a week she takes 10mg of Methotrexate.
The poor baby is taking so much, I am beginning to wonder what the side effects of combining all of this. She is such a good sport about taking it, its obvious she wants to get well. We want her well too. The JDMS seems to be under control, yet we keep having other battles to fit. Please keep praying for our baby.
We are to take her to our family Dr on Thursday or Friday to re-evaluation. We are to see Dr. in two weeks.

Saturday - May 29
Jordan has kept the fever all week. Usually 103 by 1:00am. Every night I've stayed up with her. With tylenol and cold packs we get it down but I just didnt imagine her running such a high temperature for so long. I called the hospital this morning and tired to speak to our family doctor and then the doctor that saw her in ER. Both were out of town, so I spoke to one taking our family doctors calls. He said the antibiotic wasnt working. He prescribed another and said that if the fever didnt drop by Monday, she needed to be admitted.
Fortunately, her fever came down the very next day.

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