Well, Charlotte is getting into the habit of visiting PMH on the weekends now. Unfortunately, we ended up back there again this weekend and have been told to expect to be there until at least Thursday this week, maybe longer.
It started on Saturday afternoon. Kevin noticed Charlotte had a couple of strange looking spots on her left thigh that couldn't be explained, so called PMH. They said it was a bit hard to tell what it was over the phone, so we could bring her in if we were worried about it. Rachel was picking up Charlotte then, so dropped our things at Jamie's house and headed in to PMH. We waited ages and finally saw one of the doctors and he said he had no idea what it was or what it was from, so best to take her home and keep an eye on it. He took a photo of it so he had a reference to look at if the spots changed. Home we went and had a very late dinner much to Charlotte's disgust.
Charlotte seemed OK, so she went to bed. Then at about 10pm she called out to Rachel and she raced in. She was sitting up on her bed holding her bottom, looking very scared. Rachel asked if she had a sore bottom and she said no, toilet. just as she said it, out it all came! Poor little thing had to have a shower. She did a poo, but didn't seem to realise she did one. Rachel put her back to bed and rang PMH straight away to explain what happened.
The nurse didn't seem too concerned and said she would ask the doctor what he thought and call back to let me know. The nurse called back and said it would be best if she was brought in. Rachel asked if they could do some tests to check kidney function and similar things that control waste being excreted, etc, and she said they could do that if that was a concern. So off we went to PMH on Saturday and arrived at midnight in the rain.
Charlotte was checked over and all her signs were good. They took some blood to do their tests and checked us into our own room at about 2am on Sunday. We were woken up at about 4am to put an IV line in Charlotte's arm and more blood taken, as they had found high blood sugar levels in the first lot of testing. The doctors came by on their rounds late Sunday morning and said the test results came back showing a very high reading for blood sugar levels. Charlotte's reading was 44, when it should be around 11, so four times higher than average. They suspected Charlotte may have diabetes, so she was connected up to a drip to keep her hydrated and an insulin injection was given. More blood was taken and the finger pricks started. Charlotte's fingers have been pricked and pricked over the last day and night and she has been given so many doses of insulin in her legs and tummy. They are working out the correct dosage for her to keep the blood sugar down to an acceptable level.
Apparently, diabetes can be a side effect of very high doses of steroids. Bloody steroids again! And to complicate things she has to eat so much because of the steroids, so its a bit of a catch 22. Poor Charlotte had had enough this morning. she was exhausted from not enough sleep and was bruised and battered from constant injections and finger pricks. A child's worst nightmare really, as if she hasn't already been through enough.
Off to radiation treatment this morning. Then she was back in time for her lunch tray. the highlight of her day at the moment! We had a lesson on how to do the finger pricks to test Charlotte's blood. She needs to have them before her three main meals and one in between breakfast and lunch and one in between lunch and dinner. Then one before bedtime. We were given a testing kit for Charlotte and shown how it works. We each had to do a practice on ourselves, which Rachel just couldn't do. .So lesson one down.
We had both noticed how bruised and bloody Charlotte's fingers were and mentioned this to the Endocrinology specialist and she said that the pricker the staff used was a general one that is used for all tests like the baby's heel prick tests and it was quite a brutal sort of one. The one we have been given for Charlotte is a lot more gentle and doesn't leave a mark and doesn't hurt so much. Thank goodness! Kevin started doing the finger pricks on Charlotte tonight, as he is staying with her tonight. Then tomorrow will be Rachel's turn to practice too. We have an appointment with another endocrinology specialist tomorrow afternoon to be shown how to do the insulin injections and dosage rates, etc and we will also see the dietitian. As Charlotte's diabetes is not controlled by diet, this won't be a major issue. So far we have just been told to avoid sugary types of drinks, like soft drinks, which she doesn't have anyway. Charlotte has quite a healthy diet normally, so we don't think there will be many issues there.
So tomorrow will be another long day of learning, remembering what medication when and putting Charlotte through more torture. On a positive note we have decreased her steroid dosage down from 16mg to 12mg as from Friday. Then today from 12mg to 10mg. Charlotte should not have the diabetes forever, only until the steroids are on a low dose or finished altogether. Hopefully this won't be too far away now, if we keep slowly reducing the dose.
