Gemma was discharged from ICU and hospital on Tuesday last week. Her doctor advised that we stay on for a few days to have further bloods done on Saturday just to make sure all was in order. We started packing up on Saturday morning, assuming that all would be fine and that we would be on the road by Sunday. Her bloods were done at 10am, and only by late afternoon did we hear the results. We were hanging around in limbo not really knowing what to do, but received a bit of a shock when the results came through. Her amylase levels had once again started to escalate. After a few sleepless nights (playing around with feeds and trying to discover what would work to keep sugars stable till at least 6am), as well as sitting in amongst all our luggage that was packed up and the fridge that was empty, we were starting to feel a bit negative and wholly despondent. We were now advised to stay until Monday, to redo the bloods and to see from there.
Monday started off with a sonar, where they picked up a slight amount of fluid around the gallbladder area. Normally they would probably not have worried, but this was a bit of a Catch 22 situation, whereby because the amylase levels were high, they couldn't ignore the fluid. Later in the afternoon we did bloods tests again and by 8pm we discovered that the amylase levels hadn't risen and gone down slightly. Between the doctor and us, we came to the conclusion that we could go back to Bloemfontein and redo her bloods early next week (in Bloemfontein) instead of hanging around in Johannesburg. Due to the fact that Gemma looks so well, and that she has no pain in her stomach should tell us that the amylase levels should go down and the fluid should clear naturally. One more little hurdle to overcome, but we believe that all will work out for the best. We arrived in Bloem yesterday and got a wonderful welcoming from Granny Lorna and Bapho. The rooms that Bryce and Gemma were staying in were filled with helium balloons, and we had a delicious roast for supper. Gemma's eating has improved by 100%, we have not had to give her liquid foods (frebini or polycose), she is eating all her meals, with hardly no fuss at all. I have tried to stop worrying about blood sugars or getting overly excited when they run higher. They still seem to roller coaster a bit, but at this stage (the last 3 days) the sugars have been really really good. I gave her a 175ml yoghurt before bed (with no added maizena, and she sits next to me now at 08:00 with her sugars still above 4). We just need to focus on getting her to drink water during the day. The last six weeks have been an emotional roller coaster of note, but during this time we met so many wonderful people who helped us through this ordeal. Just being in touch with others who understand makes it easier to cope with. The staff in the ICU were outstanding and we really felt Gemma was in the best care. Her pediatrician is the type of doctor that stayed at the hospital for two days into his leave. Hearing stories from the other staff, he goes the absolute extra mile to help his patients and make sure they are well. We had loads of friends visiting, and for the first 3 weeks were accommodated by special friends who put up with us coming back late at night and not being able to wake up in time before they left for work, and listening to all our frustrations throughout that time. We are very grateful for all the support, physical and emotional. This whole experience hasn't been easy for Bryce. He adores his sister and was so excited for her to be home. The first night she was back, they fell asleep in the same bed and we moved them apart later. At 12am he sat bolt upright and desperately shouted out for his sister "my sister, where's my sister?" Everybody we meet, naturally asks how Gemma is etc, and often Bryce is standing right next to her and sometimes doesn't get noticed. Please don't get me wrong, I'm not criticising anybody, it is a complete natural process for somebody to ask how a "sick" child is doing, and it's maybe up to us to acknowledge him in front of others as well. We sincerely hope that the bloods to be done early next week will show that Gemma's amylase levels are coming down and that we will all be able to go back home. The children miss their kitty's and dogs the most, and every so often shed a little tear for them.
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