I woke up to the alarm at seven o’clock. We have to be at the hospital at nine o’clock this morning.
I had a shower, got dressed then I woke Alex up. He wasn’t too pleased about me waking him up but there’s nothing I can do about it.
We had breakfast, Alex didn’t eat very much as he said he would get something at the cafeteria!
We left after eight o’clock. When we got there the clinic was pretty busy. It wasn’t very long before Alex had his blood test done. Then we had to wait a long time before anything else was done.
Karen (a new nurse) asked the routine questions. I told her about Brent having scarlet fever and about Kelly having a kidney infection. Karen said she hadn’t heard of scarlet fever for a very long time. I said well this child has had it twice now. She said that’s really unusual and that Alex should be okay. Karen said with our dog we should wash our hands and that he shouldn’t be contagious.
Before eleven o’clock Mary gave me Alex’s blood count. Alex’s ANC level was below 1000 so I thought Alex wouldn’t have his LP. At eleven o’clock Joanne said she had checked with Dr. Ch and he said it was okay. I wasn’t too pleased since in the past Dr. S said below 1000 the LP couldn’t be done or it could cause infection.
Dr. S wasn’t there this week. The doctor doing the LP I had never seen before. I asked the doctor before he started whether or not it was okay to do an LP when the ANC was below 1000. I told him what Dr. S had told me before. The doctor said he would phone Dr. Ch but I told him Joanne had already phoned. This doctor told me that they didn’t do it below 500 but it is safe between 500 and 900.
There really wasn’t a heck of a lot I could say. I could have refused having the LP done but I do trust their judgement. I’m sure Joanne thought that I was being ridiculous but that’s too bad. I want to make sure of these things first.
I told Joanne I wouldn’t be able to hold Alex so she went to get another nurse. Joanne held Alex while I sat beside him and Lorraine read Alex stories. They had quite a time getting Alex in the right position and when the doctor put his finger on Alex’s back Alex yelled that hurts! I told Alex that was just the doctors finger but he didn’t seem to believe me. The doctor said maybe it would be better if Alex laid down on his side and the nurse held him. I said that’s even worse and Alex agreed. Finally it was over with and Alex got to lay down. I entertained Alex for quite awhile. It’s pretty hard to get Alex to stay lying down.
Dr. P asked us to come into the examining room. I had to carry Alex which really bothered my back. Dr. P said Dr. S and Dr. R were both away. The doctor checked Alex and I told her Alex had a cough again similar to the cough he had in November. Dr. P said it would be better to decrease the dosage on his medication. Dr. P changed his Mercaptopurine to ¾ of a pill alternating with 1 pill daily, and Methotrexiate to 4 ½ pills weekly. Prednisone stays the same at six pills daily for 5 days and Bactrim ¼ pill twice daily. Bactrim was one pill twice daily but it was paediatric pills. The pharmacy didn’t have paediatric pills so we had to take adult pills but the dosage is the same.
I got Alex to lay down on the bed while I went to the Pharmacy. When I came back Alex was playing on the bed but he was lying down which is important. After having an LP if you don’t lie down you can get a migraine which is suppose to last for a couple of days.
I went back to the pharmacy since it was getting close to them closing for lunch. The pharmacist said the doctor had forgotten to write down Bactrim and did I need any. I said I did I’ve almost run out. She said she would phone the doctor, they don’t have paediatric Bactrim anymore the company stopped making it. I told her I would get a prescription from Dr. P and come back.
I’m beginning to feel like a yoyo. The clinic and the pharmacy are a fair walk between the two. When I got back to the clinic, Alex was calling for me. I told him I had to talk to the doctor and go back to the pharmacy because the doctor forgot to give me a prescription for Bactrim. Alex was upset that I had to go again but there wasn’t much I could do about it.
Dr. P gave me the prescription for Bactrim, she said you might as well have a years supply that way you won’t have to worry about running out for awhile.
When I got back to the pharmacy the pharmacist said it probably would be after lunch. I said I might come back tomorrow then.
I wasn’t feeling that good, my leg was bothering me, my stomach was upset and I was really tired.
Finally I was able to stay with Alex. He kept on asking for different toys to play with then it was time for Alex’s arm poke. Krisann does it now, she said Alex had fallen asleep when I was at the pharmacist and woken up calling for me. Alex must of wondered where he was and where I was.
We left after twelve o’clock. We stopped at the mall on the way home. Alex picked out Checkpoint of COPS as a prize. We came home, we didn’t get home until after two o’clock. Charlie came home at four o’clock.
We ate dinner at five o’clock, after dinner we watched tv. Alex went to bed at eight o’clock. I went to bed at ten o’clock.
Tests
WBC 1.4
HGB 13.3
Platelets 334
ANC
Medication
Mercaptopurine ------- ------5:00 p.m.
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