No news has been good news. I sincerely apologise for keeping so quiet, and I have my same excuse of not having internet at home. It is something we are going to be looking into as soon as our busy season is over, so hopefully by next year we will have it.
It has been two and a half months since Gemma has been home and about one and a half of those that she has not had any pain. She was discharged on September 8 (her birthday), and the hospital allowed us to have a party for her in the board room. She had a Dora birthday party, a couple that we had made friends with in hospital, whose twin boys had been in ICU for 100 days, organized the cake for her, and it was really special to have the boys and their sister at the party. The turnout was amazing, friends from school, etc and others we'd met during Gemma's stay came with their kids and made it an extra special day for her. The day before her birthday, her pediatrician had dressed up as a tooth fairy for one of his special long term patients. Gemma had a wobbly tooth, and wanted him to do the same for her. She spent the whole day wiggling her tooth, and on her regular visit to Jeanne that day, who asked her what she would be doing on her birthday, Gemma replied "I'm going to wiggle my tooth and bite my nails." We met a mom of a little girl in hospital, who we'd become friends with in the passage who chatted to Gemma while I got chatting to someone else, and the next thing I heard Gemma shrieking with joy as between the two of them, they'd pulled her tooth out. We raced back to the ward to sent a message to her pediatrician that the tooth fairy needed to come visiting. He was having a very busy day in theatre, so we didn't see the tooth fairy that day..........but the tooth fairy did arrive at her birthday party.......with a pretty pink bag of hair accessories. We drove back to Bloem after her party, and celebrated again with family and friends in the evening, with the left over half of the Dora cake. Michael and Bryce were still at the lodge, and it was really sad to not have spent Gemma's birthday with them, but they came to Bloem a few days later and a wonderful reunion it was. She had blood tests done 4 days later and her Amylase levels were about 300, showing they were coming down. After a great weekend together as a family, Gemma woke up the following Sunday (after being discharged), with severe pain in her tummy again. Our hearts just sank as we took her back for more blood tests, and the doctor ordered her an ultrasound as well. She wouldn't sit still for the tests and kept screaming, so the sisters were forced to wrap her in a sheet and take blood out her neck. The ultrasound came back clear, but the blood tests showed her amylase levels had risen to over 1000 again. Panic set in, but she was discharged with an oral antibiotic that we were advised to use in case a situation like this arose. Her pain lessened over time, and the blood tests a few days after the antibiotics stopped, showed the amylase had come down again. About two weeks after this, she showed the same symptoms of pain, and raced her once again to the hospital for more tests. This time the amylase levels were about 500, so the doctor wasn't concerned, and after giving her some normal child pain medicine it all cleared. That was at the end of September, and since then there has been no pain at all, and she continues to live life normally. The operation, in terms of blood sugar levels, has been a huge success. She still has Hyperinsulinism , but it is 100 times better, and when she has a low you can see in immediately. Her mood changes, she becomes irritable, and we can now give her something to eat before she goes too low. Her sugars have reached very high levels, so we need to watch her diet and keep it a Low GI one. Her sugars do come down naturally, without the need for insulin, but we do need to consult her endo, hopefully early next year to find out what the best plan is for her. Yesterday afternoon she fell asleep after eating a biscuit with icing on and a pancake and her sugars reached a level of 20, which isn't good at all, and took about 2 hours to drop to a normal level. In a situation like this we should probably have used insulin, but better still, rather have avoided giving her too many sugary foods. It is a new learning process for us, and with time we we will get this right. May God's love surround you and your families this upcoming festive season. I can't believe 2012 is closing in, it's been a tou
5 Comments
|
AuthorWrite something about yourself. No need to be fancy, just an overview. ArchivesCategories |