Gemma is back home after a rough stay for her, and no results. There is no medical reason why she is hypoing so regularly. Her insulin levels are normal, which shows that her remaining pancreas is not overproducing insulin, so therefore that is not the reason for her low sugars.
She had a CT scan done of her pancreas yesterday, and she had to be sedated for that. The reason for the scan is to see if her pancreas has regenerated itself. The CT did not show a clear picture, so she had an MRI later in the day, and had to be sedated again. In the 4 days she was in hospital she had 3 drips put in, and because her veins are so difficult to find the nurses had to try many times. She has bruises and pin pricks on both arms. SHOO, at least that is all over for now!! The MRI showed little results. This means that there is no reason for further surgery at this stage. It does however, leave us with many unanswered questions about her low sugars. We have seen in the past that after Gemma has been in hospital with a glucose drip, her sugars do sometimes come right. This is possibly due to the fact that her body just needs a glucose boost. We hope and pray that this is the case right now. Thank you for all the facebook messages, etc. during the last few days. W
3 Comments
Just a few days ago, I wrote a positive blog about a new healthy eating program for Gemma. Things have taken a turn for the worst even before we have really been able to begin. It is a bit difficult starting something when Gemma's sugars are so unstable.
I mentioned very briefly that Gemma had been having severe hypo's. We weren't too concerned, because we thought it may just be a passing phase. However, it seems to get worse every day. Yesterday, I tested Gemma half an hour before a feed was due and she was 1.5. She wasn't showing any symptoms, until I quickly gave her something to eat, and shortly after she went extremely pale and passed out for a few seconds. It is amazing though, that she responds so quickly to food, because a few minutes after that she was wide awake and having heard us talk about taking her to hospital, she piped in and said "who's going to hospital?" She has been there for over 24 hours and not much has been done for her. We have been in phone contact with her endocrinologist in Cape Town and he says the only option we have left is to do another pancreatectomy (i.e, remove more of her remaining 5%). This may possibly lead her to become diabetic, but we are so fed up having to deal with the HI that she has. We are very concerned about all the lows she has had, especially in the last month. She is an extremely bright child, but the long term damage is something to be concerned about. The surgery is just talk at the moment, so we will keep you updated as to what decisions will be made in the next few days. The other stressful factor is that her night feeds are only keeping her sugars stable till about 5:30 in the morning. This means that we will probably have to add another feed to her daily schedule. We are concerned that she may become aversive to eating with all the food we have to start giving her again. The doctors are running a few tests and scans to see if there is something else causing the low sugars, but not much is in motion today as it is a holiday. Thank you all for the continual support, love and prayers that you send for Gemma. It makes it so much easier knowing that so many people care. I can't believe it's been over two months since I last blogged. We haven't been able to get away from the lodge much, with all the long weekends, incl. Easter. The children had a very busy few weeks with loads of new friends to meet, and family visiting. The only downfall about the busy period is that Gemma wants to be out and about playing all the time, so her regular feeding program gets messed up a bit. Over this period I gave her more than one Frebini a day, because it's quick and easy.
March was a good month with her blood sugars and feeding, but her blood sugars have been all over the place during April and May. We have had a few scary episodes where she has dropped to below 2 without showing any symptoms. We haven't had to use the emergency glucagon, as she has responded well to food each time. She has also been waking up to low blood sugars and therefore we have increased the amount of maizena added to her bed time yoghurt. We have just been in Durban for the Travel Indaba, and on the way back we stopped at a health shop. We met the owner of the store at Malealea over the Easter holiday. She and her sister, had some good advice for us. We will be changing her diet, and giving her low GI meals throughout the day with added chromium and zinc. I will elaborate more in the next blog, once we have put her new meal plan into action. We really hope to see some changes, but will let you all know. Whilst Michael and I attended the Indaba, Michael's parents, who came with us to Durban, looked after the children. We are very thankful for all the help we receive from all family members. We had two days after the show to spend with them, and one of our highlights was going to Ushaka Marine World. Gems and Bryce enjoyed the jungle gym more than anything else. Our next highlight was meeting Jason and Jill (his mom). We discovered Graz through the Long family who had their story published in the YOU magazine. Jill and I have been in contact for over a year, and finally got to meet each other. Jason, Gemma and Bryce played really well together for the time we were there until Bryce found a "digger" toy of Jason's and we didn't hear a squeak from him again. Jason and Gemma made glitter pictures while we were able to chat. To follow Jason's story please see www.jasonsjourney.weebly.com. Bunka and Granny, we haven't forgotten about you!! On the way to Durban we stayed with my grandparents for a few days. Gemma and Bryce are very lucky to have great grandparents who have the energy to have our loud family stay with them. We always have a great time with them. I hope you won't have to wait as long for the next blog. We certainly hope that we will have better news about Gemma's blood sugars. Best wishes to you all, and may you all (living in the Southern Hemisphere) have |