What a weekend we have had!
On Thursday morning William decided not to wake up, in fact he slept nearly all day. He had a mild fever in the morning so we kept him home thinking he was brewing a little respiratory infection. We decided to monitor his sats and give him a little oxygen as he was so out of it. By Friday he wasn't much different. A little more mild fever but easily fixed. But still he slept and looked a bit worryingly pale. Of most concern was that his heart rate was 120-130 when zonked out asleep rather than his usual 70-80.
On Thursday morning William decided not to wake up, in fact he slept nearly all day. He had a mild fever in the morning so we kept him home thinking he was brewing a little respiratory infection. We decided to monitor his sats and give him a little oxygen as he was so out of it. By Friday he wasn't much different. A little more mild fever but easily fixed. But still he slept and looked a bit worryingly pale. Of most concern was that his heart rate was 120-130 when zonked out asleep rather than his usual 70-80.
What followed was a serious of perfectly arranged events. I had to pop to the hospital to pick up supplies for William. I had put off calling the hospital as I was worried they would want to see him and I didn't think he was that poorly. Instead I decided to ask to speak to his consultant for some advice when I got there to pick up my supplies. I so nearly didn't ask as I didn't want to take her time but outpatients was totally empty and I just went for it. Thankfully she was there and came straight out to see me. After explaining Williams' symptoms she told me he needed seeing, as an elevated heart rate with no obvious cause was cause for concern.
Thankfully Steve had cancelled his trip to London to work from home as we were unsure which way William was going to go. So I drove back home, collected Steve and William and back we came. Thankfully the consultant on call was the diabetes specialist! He did all the usual checks and we suspected he would diagnose the start of a viral infection. He decided to check William's blood sugars, which is not a standard check ever done on William, anticipating they might be low but the reading came back as 'HI' indicating a result too high for the monitor to read. He did two more tests to check there hadn't been an error and they both came back HI too. This indicated a more serious problem was going on. They quickly checked William's ketones and found that they too were also much higher than they should be. We were told William had diabetic ketoacidosis (DKA) and most likely had type 1 diabetes. Sepsis was also an additional possibility given his symptoms. My first thought was, "What have I done to give him diabetes! Is this because I have fed him a blended diet?" My concerns were quickly laid to rest by the nurse but I was still so confused how this had happened and what would it mean for William.
We were moved quickly to HDU and treatment was started for the DKA. We were told, had we not sought advice, William was maybe only 48 hours from death. He was checked regularly for signs of cerebral oedema, a rare but very serious complication, and we were very very worried.
Over the course of the night his numbers (blood sugars, ketones and blood acidity) came down and he was no longer classed as having DKA. The situation was no longer life threatening but now we had the big task ahead of learning about type 1 diabetes and getting William's diabetes under some control.
Type 1 diabetes is an autoimmune disorder, where the pancreas no longer produces insulin. The blood can therefore no longer absorb glucose from food without the help of insulin and this causes a series of problems. In order to treat this, insulin is given to the patient but it must be give in just the right amounts to regulate blood sugars. Too much insulin will give you hypoglycemia which is lethal if left untreated and too little insulin would give you hyperglycemia which could lead to DKA developing again. The amount needed will depend on the patient, how many carbs (glucose) they eat, their activity levels, how well they are, their hormones, the weather, what type of meals they have, how quickly they digest their food and numerous other factors!
Type 1 diabetes is nothing to do with being overweight, how healthy your diet is or any other factors you can control. Your pancreas simply stops producing insulin for not totally understood reasons. William developing type 1 diabetes on top of his many other diagnoses is just really bad luck. There are no links to his existing conditions. At some point his immune system attacked the insulin producing beta cells in his pancreas but the reasons for that are not really known. He joins over 29,000 other children in the UK diagnosed with Type 1 diabetes.
So now we have begun the process of learning about this new diagnosis and working out how much insulin William needs each day. So far his levels have been very variable and nowhere near what they should be. Each day his insulin doses get put up but we still have a way to go. We will need to be inpatient until they can find the correct dose for William and until we become more confident in managing it.
For William the fact that he is tube fed and has no control or choice over what he eats will make it easier on us to calculate his insulin requirement but the fact that he has no awareness or symptoms when his blood sugars are too high or low is going to be very tricky.
So, back to now and we are 188 days into this new stage of William's story and mostly things are actually ok! Thankfully our diabetes team were quickly able to secure funding for William to have an insulin pump and continuous glucose monitor which helps us a lot in controlling the diabetes. However they are just tools and have taken a lot of working out! Between Steve and I and the pump and sensor we are performing the job of one of William's organs. Every day is different and despite being able to tightly control his carb intake, we see massive variations day to day in his control. We are so thankful for an incredible diabetes support team who have got us back on track, despite a case like William being quite unusual for them too! Our diabetes specialist nurse is so lovely and encouraging and always available to offer support. The team at the hospital also run a 24hr helpline in case of unexpected problems which is so useful.
Once every three months William goes to diabetes clinic and has a blood test called HbA1c which is used as an indicator to show how well your diabetes control has been over the last 3 months. The aim for diabetics is to get 6.5%. On diagnosis Williams was around 9.5% I think. A reading of 12-13% is considered very high. William's first two results since starting treatment have been 6.6% and 6.7% which is pretty incredible given his target range is higher than most peoples.
Diabetes continues to challenge us and complicate many areas of William's care but it feels safe to say we're conquering this mountain. I just hope there are no more new challenges for a while!
Thankfully Steve had cancelled his trip to London to work from home as we were unsure which way William was going to go. So I drove back home, collected Steve and William and back we came. Thankfully the consultant on call was the diabetes specialist! He did all the usual checks and we suspected he would diagnose the start of a viral infection. He decided to check William's blood sugars, which is not a standard check ever done on William, anticipating they might be low but the reading came back as 'HI' indicating a result too high for the monitor to read. He did two more tests to check there hadn't been an error and they both came back HI too. This indicated a more serious problem was going on. They quickly checked William's ketones and found that they too were also much higher than they should be. We were told William had diabetic ketoacidosis (DKA) and most likely had type 1 diabetes. Sepsis was also an additional possibility given his symptoms. My first thought was, "What have I done to give him diabetes! Is this because I have fed him a blended diet?" My concerns were quickly laid to rest by the nurse but I was still so confused how this had happened and what would it mean for William.
We were moved quickly to HDU and treatment was started for the DKA. We were told, had we not sought advice, William was maybe only 48 hours from death. He was checked regularly for signs of cerebral oedema, a rare but very serious complication, and we were very very worried.
Over the course of the night his numbers (blood sugars, ketones and blood acidity) came down and he was no longer classed as having DKA. The situation was no longer life threatening but now we had the big task ahead of learning about type 1 diabetes and getting William's diabetes under some control.
Type 1 diabetes is an autoimmune disorder, where the pancreas no longer produces insulin. The blood can therefore no longer absorb glucose from food without the help of insulin and this causes a series of problems. In order to treat this, insulin is given to the patient but it must be give in just the right amounts to regulate blood sugars. Too much insulin will give you hypoglycemia which is lethal if left untreated and too little insulin would give you hyperglycemia which could lead to DKA developing again. The amount needed will depend on the patient, how many carbs (glucose) they eat, their activity levels, how well they are, their hormones, the weather, what type of meals they have, how quickly they digest their food and numerous other factors!
Type 1 diabetes is nothing to do with being overweight, how healthy your diet is or any other factors you can control. Your pancreas simply stops producing insulin for not totally understood reasons. William developing type 1 diabetes on top of his many other diagnoses is just really bad luck. There are no links to his existing conditions. At some point his immune system attacked the insulin producing beta cells in his pancreas but the reasons for that are not really known. He joins over 29,000 other children in the UK diagnosed with Type 1 diabetes.
So now we have begun the process of learning about this new diagnosis and working out how much insulin William needs each day. So far his levels have been very variable and nowhere near what they should be. Each day his insulin doses get put up but we still have a way to go. We will need to be inpatient until they can find the correct dose for William and until we become more confident in managing it.
For William the fact that he is tube fed and has no control or choice over what he eats will make it easier on us to calculate his insulin requirement but the fact that he has no awareness or symptoms when his blood sugars are too high or low is going to be very tricky.
So, back to now and we are 188 days into this new stage of William's story and mostly things are actually ok! Thankfully our diabetes team were quickly able to secure funding for William to have an insulin pump and continuous glucose monitor which helps us a lot in controlling the diabetes. However they are just tools and have taken a lot of working out! Between Steve and I and the pump and sensor we are performing the job of one of William's organs. Every day is different and despite being able to tightly control his carb intake, we see massive variations day to day in his control. We are so thankful for an incredible diabetes support team who have got us back on track, despite a case like William being quite unusual for them too! Our diabetes specialist nurse is so lovely and encouraging and always available to offer support. The team at the hospital also run a 24hr helpline in case of unexpected problems which is so useful.
Once every three months William goes to diabetes clinic and has a blood test called HbA1c which is used as an indicator to show how well your diabetes control has been over the last 3 months. The aim for diabetics is to get 6.5%. On diagnosis Williams was around 9.5% I think. A reading of 12-13% is considered very high. William's first two results since starting treatment have been 6.6% and 6.7% which is pretty incredible given his target range is higher than most peoples.
Diabetes continues to challenge us and complicate many areas of William's care but it feels safe to say we're conquering this mountain. I just hope there are no more new challenges for a while!
