If all continues the way it's going, as we sincerely hope happens, this may be my last daily blog for a while, but I promise to try my best to continue with a monthly update. So until next time, I thank you again from the bottom of my heart (and on behalf of Michael) for all the support.
0 Comments
YAY! Gemma was moved to the pediatric ward this morning. She had a great night of blood sugars, her lowest was 3.7 at 8am this morning. All she seems to need before bed is a little tub of yoghurt. Just so that you understand a bit better, pre-op she would have to have at least 175mls of yoghurt with 30grams of Maizena added to it to allow her sugars to remain stable through the night, and often she would wake up with sugars below 3.5. She ate pap for breakfast, and apparently did so willingly. This may not be the best for her now as it is probably high GI, and we have to start focusing on the opposite kinds of food to keep sugars lower rather than higher. At 10am her sugars were over 12, and we learnt how to administer insulin with a pen. Although, initially very frightening for her, she said afterwards that it didn't really hurt so much. I know the idea of injections sounds awful, but to control high sugars, at this stage, seems 100% less stressful than dealing constantly with low sugars. Thank you to everyone for supporting us through the frightening decision of whether we should have done the op or not. We can CLEARLY see it was the right decision. For Gemma - to have more control of the lows she was constantly at the risk of having. For us as a family - the daily stress and worry. This does not mean that we can totally relax, because as I've mentioned, the high sugars do mean harder work, and probably more sugar testing, especially during the next few months, but we can definitely deal with this as we move forward. She is also still at the risk of having lows, we understand that, but we hope that because she won't be having so many, she will be able to feel them coming and therefore show signs before they drop too low. Gemma has lost 3kg, so looking very fragile, but with some teamwork, we will get our little girl to put that weight back on shortly. She is feeling very chuffed in the pediatric ward. She has her own bathroom and TV, and one of us gets to sleep in with her at night. I now believe that all the pain our little girl had to endure has been worth it, for a safer, more independent life for her. Once again we have been guided to make the right decision, she has been wrapped up in God's hands, and He has yet again guided her through another obstacle and come out stronger for it. Thank you again and again. 07/18/2012
Shoo, what a busy day in the NICU! Gemma was given a ballet tutu, stockings and ballet shoes by her cousins Josh and Daniel. We decided to bring them to her this morning, as she is starting to feel much better. I bumped into a friend's mother on the way into the hospital, and arriving a few minutes later Gemma was already kitted out in her ballet gear, being given lessons by her favorite nurse Jeanne. Taken aback at how cute and adorable she looked, but also for the first time noticing how much weight she has lost was quite a scary sight. She is still totally unwilling to eat, but we don't want to have to resort back to Frebini's until we ultimately have to. With much effort and encouragement, she is managing to have a few mouthfuls at every meal, with yoghurt and milk inbetween. At lunch today we had to force ourselves to leave because she plays up when we are around. Her sugars have been relatively stable, even with the small amounts she is eating - this is fantastic news for us, and we strongly believe that without the Frebini's and constantly feeling full, she will eventually become willing to eat! She hasn't had to have insulin since last night, so although her sugars are still dropping they are doing so far more slowly - allowing her that extra time to eat at her own pace. Her own pace, though, at this stage would be 1 hour per every mouthful if she had half the chance. As frustrating as the whole process is, I had a good laugh when Jeanne was explaining how Gemma was trying to negotiate her way out of eating. She was questioning her about what she eats etc, and then eventually asked her what Jeanne had eaten for lunch and what she had had for breakfast. On hearing that she had had a protein shake for breakfast and hadn't yet had time for lunch, Gemma bluntly told her that she doesn't have to either. Jeanne eventually asked her what she would like to be when she was older, and on replying that she would like to be a doctor, Jeanne said that couldn't possibly be a doctor if she was small and skinny. People would never believe, that a small, skinny doctor would be able to help them. This seemed to have worked and she managed to eat a small portion of mash, chicken and veggies, with syringes of milk to wash it down, by the time we returned. A few days ago we met a school friend of my mom's over coffee. She reminded us of Mandela Day today, and thinking there was nothing that we could really do being confined to the hospital all day, she suggested we make a birthday poster for him. She delivered a package to the NICU consisting of a large piece of cardboard, koki pens, and decorations. We spent our 67 minutes this morning with Gemma creating a beautiful birthday card for Nelson Mandela, on behalf of all the NICU babies. Gemma did a double dose of 67 minutes, by thoroughly entertaining the nurses with her ballet moves this morning. Due to Gemma's vomiting on Monday night, she was put on to a 5 day antibiotic, as her blood results came back showing that she had some minor infection. The antibiotics are administered intravenously, meaning that she can be discharged on Saturday - at the earliest. The doctor has currently prescribed her a insulin pen, and the next step is for us to learn to administer insulin and understand the quantities to use. Thank you for all the thoughts, prayers and words of encouragement. Once again, this has helped us get over another obstacle in Gemma's life. Bryce continues to be happy. He went back to Malealea for the weekend, and just got on with things there - carrying his cat Jungle around the lodge as well as wearing his scary lion mask roaring at everyone in his way. He will be back in Bloem for the week, and hopefully be coming to Johburg for a visit quite soon.
The last two days have been a little up and down for both Gemma and ourselves. She is generally feeling very well after the op, with occasional complaints about pain in her stomach. The only pain relief she is receiving is Calpol, so that is a great sign that no more serious pain relief is needed. Her drip stopped yesterday morning, so true blood sugars are starting to show now. She is being kept in, until we can see a regular pattern with her blood sugars. This is all completely new to us. The pattern so far, is that her sugars rise to above 10, and she then receives a small dose of insulin. She then needs to have a small snack for the insulin to do its job, and her blood sugars are then checked 30 minutes later to see if they have gone down. The fact that she can just nibble and not have to be forced to eat is absolutely amazing. It seems it will be more work for us, but hopefully we will be doing away with that continual stress of trying to keep the sugars up. Keeping sugars down, seems a little more relaxed. Shortly before she fell asleep last night, she had a huge vomit, and most of her supper came out. She didn't have a very good night, as she spent most of it coughing and sneezing. The good thing though, is that her sugars were stable throughout the night. They dropped to 2.3 at 8am this morning, but this is understandable as she had no food in her stomach. We won't be able to see any results, until she is completely well again. It has become easier to leave Gem during non-visiting hours as she has been allowed to follow the nurses around and help out with the premature babies - fold their clothes, get bottles ready etc. Monday is bloods day, and a lot of them have blood taken from them. Gemma really enjoys watching this. Unfortunately, with the cold she has now, she can't walk around the ward until her cold has gone. It is still a waiting game, but generally all is still good! 07/14/2012
Shorty after Friday's blog, where I wrote that I hoped Gemma's sugars wouldn't drop to below 4.2 as the doctor had decreased her drip flow, her sugars dropped to 3.6. Two hours after that to 3.4. Gem's had fallen asleep, so Michael and I went for some coffee. We both just sat and hardly said a word to each other. All we have known before was the pattern of sugars dropping and not coming back up again. I think we were both secretly very heart broken and both expecting the worst. We got back to the unit, just in time for her next test, and AMAZINGLY - her sugars were 4.8, and had gone up again. If we could have jumped up and down in the ICU, I'm sure we would have. Although she was still on the drip at the time, it was running at such a small amount, that would never have kept her stable in the past. Friday became an even better day, when her nose tube, catheter, and a tube in her stomach draining fluids after the op were all taken out. Unfortunately the drip in her right arm became blocked towards the evening, which is where they were taking blood to test her sugar. It just means that she is back to finger pricking again. Gem has been given 100mls of milk every two hours, and been encouraged to eat anything she wants at meal times. She has not willingly taken in much to eat yet, but with a little help ate three slices of paw paw last night with a tea spoon of mince. Since our almost scary incident, of what we thought would be a low, her sugars have been much higher. Doctors orders are to give insulin when sugars are above 12, at this stage only up to 2 units, a minute amount. She has been given about 2 a day, luckily through the remaining drip, and not with injections yet. I think we are starting to get our heads around her developing diabetes, but with the drip still running and her body still getting used to food, we won't know for sure for another few days. Generally Gem is much much better, and 99% back to her chatty self. The physio is worried about the phlegm in throat that could lead to other complications, if not looked after properly. She continues to work on and with her. Gemma's wound is healing nicely, but is still painful at times, so she receives pain meds up to twice a day. She has had Granny Lorna and Bapho visiting, as they had to come to Johburg for a few days. Many of the nurses are drawn to her, and often while we are there, different nurses will come in to chat to her and see how she is doing. While speaking to Jax on Friday to hear how Bryce was doing, he spoke for himself in the background singing loudly away in the bath. Last night he was the star of a show that was put on by Katie, Matt and other friends, and had the adults in fits of laughter. From the photo I have seen, he was dressed up in a dress with a shawl over, long golden locks and a straw hat, not to forget the ballet shoes, holding a doll upside down. Happiness is............... Lots of love and God Bless!!!! PS: I had the intention to try and reply to individual people who have written comments, but I'm not too sure how to do so without replying to myself. So please know that we are very grateful for each and every message received. Thank you.
What a wonderful morning - we walked into Gemma's room, to her sitting on a chair behind a table staring awkwardly at a coloring in book the nurse had given her. I think she was unsure as to how she was going to be able to color in, when her right hand was bandaged up with a drip in, and a prong on her finger. Her face lit up, for the first time in 3 days, and she gave us the most beautiful smile. Michael, last night, had told her that we would be back at 09:30, when visiting hours started, so every so often she would call the nurse and ask her to show her how many more hours on the clock in her room, it would be till we would be visiting. While we were sitting with her and looking at her coloring in book, she took it upon herself to try and write her name in her book with her left hand - and she did! On doctors orders, she was given bits of apple juice to try and drink yesterday, which she didn't really want, and struggled to get even a few sips down. She is not fond of sweet juices, but this morning she willingly drank about 25mls of milk. Baby steps. As I mentioned yesterday, Gemma's oxygen levels were slightly low. Whilst I was writing the blog, the physio had come to do some mild physio on her, and Michael was encouraged to take her for a little walk around the unit. She went to visit all the little premature babies. She was also given a little contraption to practice some blowing and sucking, by blowing through a tube to get a little ball to jump up and down. She does this every hour. Her oxygen sats have been very good since then. She is able to talk a little louder today, without strain, so I'm sure these exercises have helped in that regard as well. Her blood sugars have still been good, with the lowest being 4.2 this morning. We trust that they will not go lower than that. If all goes well today, and she tries to eat/drink a little more, hopefully her nose tube will come out. Bryce is as happy as can be. He has been staying with Granny and Grandpa as well as his cousin Josh, and is moving to Jax's house today to spend a few days with his cousins Kate and Matt. He still only speaks to us for a minute or so and is then off to play. I would like to ask you all to keep our special friend Jill, who is having a hard time with Jason, trying to find a school that will accept him next year as he still has his feeding tube. If it weren't for Jill, I would never have thought of starting this blog for Gemma. To read her and Jason's story, please visithttp://www.jasonsjourney.weebly.com.
Yesterday, when we arrived in Gemma’s room, the nurse looking after her knew a lot about Gemma’s family and life at home. We had mentioned briefly before we left home that we would think about looking for a “hanslammetjie” for Gemma and Bryce to rear. Gemma and her nurse had been discussing names for her baby lamb – oops – the pressure to find one is now on. It is really hard to understand how she is able to talk so much, because when we are around her she doesn’t say much and we can see that she is in a lot of pain. This characteristic is incredibly touching, it’s as if she knows she has to be brave when she is on her own, but when we are there, maybe she feels she can just relax and knows that we are there to look after her. One nurse laughed and said Gemma had asked her to please leave the room because she was talking too loudly. Gemma slept for most of the day yesterday, so nearing nighttime she had a bit more energy and it was very difficult to leave her. She eventually fell asleep at about 10pm, but the morning nurse said she slept right through the night. Her oxygen levels have been lower than they should, there could be many reasons for this, possibly a side effect from the painkillers. The nurse wanted to give her extra oxygen. This started making her a bit upset, until we reminded her that her great grandfather, Bunka, uses a tube like that in his nostrils for a couple of hours every day. She was then happy for us to take a photo, so we could show him at a later stage. We have been mostly focused on the fact that the operation was a success, as well as her recovery and healing, that for the first time in her life we have not even been concerned about her blood sugars. On that note, however, the blood sugars have been excellent so far. She has been on a 5% dextrose drip and her sugars have been stable for the first time ever. The only drip that has worked in the past to keep her sugars stable was a 10% dextrose drip. As excited as we would like to be, we know it is still early days, and the true result will only show when she is off the drip and starts eating. We are still hanging on to that hope that a miracle is going to happen!!!!!! Our little girl deserves it! In the first blog I wrote "Gemma's second pancreatectomy" I mentioned that I had received an email back from an CHI specialist in the States, who had not encouraged us to do the surgery. I wrote back to him saying that although we are extremely thankful that he had taken his time to contact us, we were going to take the advice from our SA endocrinologist. I received a reply from him last night saying that he completely understands, and he is always a bit reluctant to give advice as he doesn't always know what the medical facilities are like in other parts of the world. He wished us luck and asked us to let him know how it all goes. Although I already know that this was the right decision, it was just like another little weight off my shoulder when I received this email. Lots of love to you all! 3 Comments 07/11/2012
We are currently sitting in the hospital foyer, waiting for visiting hours that start at 09h30, and happy to do so. The reason I say this, is that this is the first hospital we have been to that we feel totally relaxed and genuinely feel that Gemma is in the best possible care. Everyone in the hospital is extremely friendly, and nobody walks past without greeting. We admitted Gemma at 11:30 yesterday, and were sent to the surgical ward where we waited most of the afternoon. Thee were 3 children in total, and because Gemma's would be the longest op, she went last. This was a great advantage, as during the day she saw the other children putting on their theatre gowns, and kept asking when it was her turn to put on her white dress. Getting bored towards the end of the day, she became more and more excited about putting on her dress and about having her turn to to into theatre. It was very touching, and as many of you have seen on her Facebook photo, she was actually smiling a few minutes before going in. We met her surgeon and anesthetist during the course of the day, and although both extremely professional, were both laid back and easy to talk to. Gemma spent a bit of the afternoon on her bed playing a few games, but most of it taking her dad's hand and exploring the hospital. At 4:30, she was given her pre-meds. Some Calpol, with a dash of something else to relax her. One of us was able to go into theatre with her, just until she was asleep. Michael let me go in, which I felt very grateful for. It's not easy being the parent sitting outside waiting and not knowing. The pre-meds were making her drowsy and even slightly happy. By the time we wheeled her into the theatre for her final anesthetic, she looked at me and said "mom, i like this hospital, even injections are nice." This little comment made watching her fall asleep, much much easier. The op started at about 5pm. We were given updates every 30 - 40 minutes. I can't explain what a difference that makes to anxious parents waiting outside. It kept us calm and relaxed during the 2 and a half hour wait. At about 19:30 the surgeon came to tell us that all had gone according to plan. Gemma only had close to 5 % left of her pancreas remaining after her first surgery. He said he was able to take out about 25% of that, as much as could have without doing any damage to the surrounding organs. He said it is difficult to say at this stage, if there was any damage done to the bile duct, which we hope and pray did not happen. We will only know during the course of her recovery. Besides seeing Gem come out of the theatre, asleep, we were able to see her again at about 20:30. She was in a large amount of pain, which was very difficult for us, but on asking if she was ok, she nodded her head and said she is sore but she is ok! She is such a brave little soldier, and I really really hope that this pain she has had to go through will be worth it in the end. Her sugars were high immediately after the op, and so she was given some insulin on her pediatrician’s request (who may I add, is also an amazing doctor). This is normal for post op stress, so we still wait and see what the outcome will be. We snuck into the ICU this morning, and the nurse looking after her has given her more pain medicine, so she had just gone back to sleep. She had had a short conversation with Gemma, and all Gems could talk about was her brother Bryce. It is comforting to know that she wasn’t stressed without us being there. Visiting hours start in 15 minutes, so we will be sitting by her bedside throughout the day. Bryce is doing well. He is staying with Granny Lorna and Bapo. He is having a ball. We are only able to chat for about a minute and then he wants to go play again. We are blessed with the most amazing family we could ever ask for. The support from each and every one of our family members is out of this world. Thank you again, (I can never say it enough), for all your support, strength and love being passed our way. Having this social networking (facebook etc) has been an absolute blessing to us, knowing that we are not alone in this. Have a lovely day and God Bless!! Some of you may be a little confused, as the last time I wrote we were still taking our time and thinking about whether we should do the second pancreatectomy or not. Well this is what has happened since then!
The day after I wrote the previous blog, the surgeon's secretary phoned and told us there was a date available on the 10th of July. We were a bit taken aback, because as you know, we were still very undecided. Gemma goes through phases, usually a week or so at a time, where her blood sugars can be good, and this was one of those weeks, so that is the main reason we were a bit weary. The emotional roller coaster is always the same. The times she has good sugars, we always think that things are getting better, and have that hope that she could be growing out of it. Then.........bang, another low comes. This is exactly what happened that day. We were out shopping and her feeds were the same as every day, and because her sugars had been good, I relaxed a bit (the usual pattern), and was 10 minutes late on her feed. Luckily this time, she started showing signs of a low. Going pale, rubbing any material she can find, and making sucking movements with her mouth. I raced her to the car and by the time I got there, she was very close to passing out, but I was able to squeeze food into her mouth. Although her sugars rose fairly quickly, her body took a long time to recover from the low. She was crying and lethargic for at least 20 minutes after. As dramatic as it sounds, this is what helped us make our decision. We were reminded, through this happening, that this is what we are fighting every day. She is at the constant risk of having one of these lows every minute of her life, and the only thing at this stage that can prevent it is food. Hence the 1 - 2.5 hourly feeds we give her throughout the day. Her morning sugars are also totally unpredictable, but generally she wakes up with sugars below 3.5, and when she does, we know that they have been dropping since the early hours of the morning. For us that first low, was a clear indication that the op is what needs to be done. I can't explain how amazing this is, but every time I doubted having surgery in the last week, her sugar reading would be below 3.5. She had another bad low, a week later. I hate the fact that Michael's parents had to witness it, because they had never seen one before, but I also believe she had one at that moment for a reason. This time she fought so hard thrashing her arms around that I had to put my arm around her neck and force a syringe into the gaps in her teeth. Once again as well, she took ages to recover. It's hard for people to really understand the trauma we as parents go through when we have to deal a bad low. We were all set and ready to come to Johburg, and as we were leaving I received an email back from one of the world specialists in CHI, from the States. I had asked his opinion on surgery. He replied saying he would be reluctant at this stage, and we should rather fly back to the UK and be treated by Dr Hussein (the first Dr who treated Gemma during her first op). He suggested we try Octreotide again. The same medication Gemma grew immune to in the first place. This medication, I believe, also had a hunger suppressant as a side effect. To put her back on that, after what she went through to learn to eat, would not be an option for us. This threw a major spanner in the works, and got me in a complete tizz. After much thought as to what to do, we realized that we just need to trust in one doctor. We have chosen Dr Segal as our endocrinologist, and we know he is brilliant, and one of the best in South Africa. Gemma's chances of becoming diabetic after the surgery are very high. If this is the case, we have the support here right on our doorstep. I know diabetes comes with it's own problems, and I do realize the lows will still come, but at least there will be a medication (insulin) to help regulate blood sugars, and we won't solely have to rely on food as the thing that keeps her alive. The last two days have felt like I have been studying for the biggest exam of my life. I have been on the internet solidly, but this in itself, has not been a good thing. There is a lot of information out there against us, i.e things that can go wrong in the surgery, the battle of diabetes, etc. However, I still believe that this is the right decision. I trust in Gemma's endo, and I trust in Gemma's surgeon, but most of all I trust in God, that He has led us to make the right decision. Love to you all, and I will |