Three weeks ago today, Gemma had her second pancreatectomy and will be going into theatre again this evening. After several bloodworks and scans, there haven't been any answers as to why her she is still in pain. The only abnormal result is that her amylase levels are high and not coming down "Amylase is an enzyme that helps digest carbohydrates. It is produced in the pancreas and the glands that make saliva. When the pancreas is diseased or inflamed, amylase releases into the blood".
I'm not entirely sure, but this could explain her low blood sugars she has been having. However, the last two days, she has been having high sugars again, so as her pediatrician explains it as a stuttering pancreas, which would be spot on. She will be having a laporoscopic procedure this evening to see if there is anything on the pancreas, i.e. a cyst etc. which if so, could possibly be removed. We really hope and pray that the surgeon will be able to find the problem, and help to ease her pain. It is not constant, so Gemma is able to walk around and be herself most of the time, and when there is pain she is given pain meds to ease it. My mom has been by her side for the most part of the previous three days. She is extremely close to her granny, and is more than happy for her to sleep over at night. My mom has slept by her side for the last two nights, allowing us a huge break, and time to spend with Bryce. We are ever so thankful for all her love and kindness. Gem will be going in at 8pm,so please once again keep her in your prayers. Thank you!!
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To start off on a positive note, the nursing staff have really taken into consideration all the things we have complained about, told us their sides of the story, and what it boils down to is that there may be a lack of communication between night and day staff. We really appreciate their openness, and the fact that the problems are now dealt with instead of leaving us in the dark. Once again we are happy with the service and that helps to relieve a bit of the stress and tension.
The last couple of days have still just been a waiting game, hoping that the antibiotics are still continuing to help Gemma's pancreas and abdomen area get back to normal. We expect that they will do bloods again in a day or two, to see if all the counts look better. With a miniscule amount of pancreas left, it is still overproducing insulin, and lows are still occurring. It feels like the last three weeks have all been in vein, and the nightmare of HI is here again. We are back onto Maizena for night feeds, and back to pumping food in when sugars are low. However, this hospital visit has been an absolute humbling experience. There are children here with conditions far worse than Gemma's, children that are admitted into hospital every 4 weeks for treatment that can only be done here and not at home. Children that have literally spent half their lives in hospital, with very little hope of their situation changing in the future. We have met single moms, whose husbands have left because the stress of their children's illnesses was too much for them to handle. Yes, it is extremely disappointing that things haven't quite turned out the way we expected, but we have the privilege of being able to treat Gemma at home. We have the support of an extremely tight knit family, who are able to look after Gemma when we need a break. My mom is coming to Johburg today, and bringing Bryce with her. We are so excited about that, and counting down the hours to see our little boy. We only have about 3 more hours to wa It is probably not a good idea to write a blog being tired and grumpy as I may say something I’ll live to regret. It is unfortunate, however, that after having raved about this hospital we have had a somewhat disappointing second time round. With the exception of the excellent doctors and a few nursing staff, the quality of the service in the pediatric ward has not been up to our expectation. Maybe it’s because I am comparing the service to the NICU, which is completely above standard, or maybe I’m just frustrated in general and it’s easy to take it out on somebody or something else.
The morning that Gemma was meant to have her CT scan done, we were a bit surprised because by 9am nobody had said anything about it, and we had heard the doctor ordering it to be done first thing in the morning. Michael went to the nursing station twice asking what was happening. Both times the nurse just told him that CT would call when they were ready for Gemma. Eventually at about 11am Michael went directly to the X-ray unit and asked them what was happening. They said that no CT scan had been ordered. On coming back to the ward, Michael tracked down the one only nurse we feel we can rely on, and he eventually found the write up for the CT scan shoved, by the night nurse, underneath some books at the front desk…………need I say more??? About an hour later, she was brought a horrible liquorice tasting liquid that she had to drink, which lights up the internal abdomen area so as to be able to see anything from the scan. The previous time we were here to do the scan before the op, she had managed to drink up the entire litre without any problem at all. This time was a completely different story. I wonder if it’s possible that because she is eating a wider variety of food now, that her taste buds have altered in some way or other. With a big struggle she managed to get about three quarters of it down, and then……..it all came out. The next attempt was not successful either. One of the ladies from CT brought her a new undiluted one (about 30mls), which she said Gemma could drink over 2 hours if she needed to. She was really great in helping to make the next round more exciting, by allowing Gemma to sit in one of the rooms behind the desk and see images of previous scans that had been done. With a syringe we were able to get about 2mls in at a time with a 5 minute interval. After an hour and a half, she was left with about 4 mls to go. I had been angry with her previously for vomiting the other liquid (because she had been playing up, and crying unnecessarily at times, almost forcing herself to vomit) and she looked up at me then with big eyes saying “Mommy, what happens if I need to vomit again?” This time she had been so good and it was obvious that the vomit was uncontrollable. She didn’t need an answer to that question and before I could say anything it was all on the floor. The ladies took her in for the scan anyway, and only then did we know that there was a third option, an enema. I suppose it’s not something they encourage as it is uncomfortable for a child, and that is why they use it as a last resort. After two long days at the hospital the results from all scans came back as the same. There is liquid in her abdomen caused by three possible things. Firstly, that her pancreas could be inflamed (pancreatitis), which is what she is being treated for at the moment. She has been on an intravenous antibiotic for the past two days, and will be going in for another scan today to see if the liquid has subsided. The other two possible scenarios are that the bile duct is leaking fluids, or there is an infection of some sort. If this is the case, the surgeon would need to go in again with a scope and drain and clear that up. He still believes though, that if that were the case, she would definitely be running a fever, so we pray that the scan today shows that the liquid has subsided. Her day blood sugars are still a little bit erratic, rocketing to 14 today, but still not needing insulin as they still come down on their own. She had a low of 2.6 yesterday, but it is really difficult to get a proper routine going here in the hospital. Although she is managing to still eat, because of the pancreatitis (if that is what it is), it does seem to be painful, probably when her food is digesting. The main concern we have now is that her night sugars are dropping once more in the early hours. She woke up with a 2.5 yesterday morning. As disappointing as it is, it just means we will have to go back to adding Maizena to her night yoghurt. We had planned to go back home yesterday, and I know it’s just one more hurdle to get through, but it’s starting to feel like it’ll never end. We miss Bryce so much now, but are glad to know that he is still happy and being looked after so well by everybody. Speaking to him yesterday, was the first time we sensed a bit of sadness in his voice. He has never said though that he’s sad or misses us, maybe he just knows, as little as he is, that he has to be strong. In a week or two, this will all be over, and if Gemma’s sugars do stay low, we at least know now that we have done EVERYTHING possible to try and fix it. With all the support we have around us, we will get through this, I know, but it’s always hard at the time. I wrote up and till here at 5:30 this morning, after not having slept much, and am now feeling a bit better. Instead of going back and changing the blog, I thought I'd leave it be. I can't always be positive, it wouldn't paint a true picture. We have to fill out comment forms every morning, and I mentioned some of the issues we'd had with the nursing staff, and hope they can use the information to improve certain ways of doing things. At the end of the day, Gemma is treated well by the staff, they all adore her and that is what matters most. My day lifted this morning at breakfast time, when Gemma ate all her All Bran Flakes, and said she really liked them. At the start of breakfast, I said to her that everytime we fight over food, it breaks a tiny piece of my heart, and that one day it might stop working. She seemed to really take that in and her moans and groans were replaced by a big smile, saying it was yummy. Shortly before this, the doctor had ordered the nurse to put numbing cream on several parts of her body to take blood, there are two patches on her either side of her neck in case they can't get from other veins............totally heartbreaking, but lets hope that they find some elsewhere. After breakfast she went in for another ultrasound, and it looks like the liquid has subsided. The doctor hasn't analyzed the scans yet, but hopefully will come back with some good news. The scans, along with the blood tests to be taken should tell us what we need to know. The dietician that has been helping us in hospital has co-written two recipe books (Snacks and Treats for Sustained Energy 1 - Gabi Steenkamp and Jeske Wellmann and Sustained energy for kids - Gabi Steenkamp, Tanzia Merlin and Jeske Wellmann), that we got from her this morning. I thought I would just share this for any mom with small kids, or adults for that matter. The recipes all look delicious, and are all low GI. I think kids all kids, with blood sugar problems or not, would benefit from these meals. Love to you all and hope you have a fantastic weekend!!! Gemma was discharged on Saturday morning. On Sunday she started complaining that her stomach was sore, but it seemed to be only at meal times. We initially thought that maybe she was playing up a bit to try and get out of eating. The pain seemed to come and go. On Monday she starting walking a bit hunched and it seemed to have gotten a bit worse, but every time we mentioned that we needed to take her back to the doctor she would say it wasn't' sore and walk upright, but we could see something wasn't quite right. On Tuesday, she woke up at about 3am, feeling very uncomfortable, and we decided then we would take her back to see her pediatrician. We had an appointment with her dietician first, and were only able to get to the hospital at about 2pm.
The doctor ordered an ultrasound and an x-ray to be done. Both results showed that she has some sort of liquid in her abdomen, which looks clear (at this stage I'm not entirely sure what that means). After the x-rays, Michael went back to the ward with Gemma, while I waited to get a copy of the results. The doctor wanted to put in a short line, to start administering antibiotics. Our poor baby girl is so terrified of drips being put in. I don't think there is a single vein in her body that has been untouched. To make matters worse, her veins are extremely hard to find, and all the "good" ones have been used so many times that blood does not come out of them easily. They do at least apply a numbing cream on at least 4 different areas, in case they don't get a drip in on the first go. I didn't need to look hard to find them when I walked into the ward, the sound of her agonized crying led me to the room she was in straight away. We are currently waiting for today's CT scan, with this they are hoping to find out what that liquid is. The fact that she doesn't have a high temperature and not vomiting is a really good sign that it may not be anything serious. However, rather safe than sorry. In general, her blood sugars have been great. We saw her endocrinologist on Monday and he was very confident and happy with her blood sugar readings. He even went as far as saying that we should get to a stage where we need only test her once or twice a day. He basically welcomed us to a new stress free life. From having the feeling of being on top of the world, to having the feeling of the world being on top of us happened for the rest of the afternoon. Before her next feed her sugars were 2.7, which isn't the end of the world, but those are readings we just didn't want to be seeing. The next reading was 3.5, and her night sugars remained in the low 4's all night until at 3am when they started dropping to the 3's we gave her another yoghurt. It felt like we were back to square one, and having almost given up all hope at that stage, thinking that we going down "that" road again, we started thinking about what we had given her to eat the day before. Her breakfast had been a high carb b-fast that we had always given previously. Later in the day I had given her cottage cheese and crackerbread, which I had a strong feeling was not the best decision. We were due for an appointment with her dietician on Tuesday. She confirmed our instinct that the high carb breakfast is too much for her pancreas to now handle. It gets it over working, and then it starts overproducing insulin and that would explain the low sugars later during the day. The cottage cheese is very high in protein, whilst the cracker bread is too low in carbs, not allowing her sugars to go up fast enough and that would explain her sugars staying low during the night. She has given us a very simple program to work out the right amount of carbs per meal and per snack and hopefully that will keep help these sugars to behave themselves. It will probably take a few days to get used to what foods work and what foods don't. We look forward to our new lifestyle, a healthy one for the entire family. You can't teach an old dog new tricks, so poor Michael will have to hide his sweets, condensed milk etc. far away and eat them only when the kiddies are asleep. Luckily Bryce is still young enough to learn, although........I can already envision boys outings to Sweets For Heaven. Thank you once again for the love and support and especially for helping us not to lose Faith, when the times get tough! Just to share a funny from Bryce. While he was staying with Jax (my sister), he kissed a little girl, once on each cheek. The following day his cousin Katie asked him why he had done that, and he replied saying "I wanted her to turn into a frog." LOL |