Firstly, I want to say how proud we are of Tocky. He has recntly been to his Christmas party with the NHS for all the Diabetic children and we managed to stay all the way until the end unlike last year - we lasted there 10 mins accompanied by a hysterical and tearful Tocky! He had a moan but no tears when we arrived but soon settled down when we went into the room where there was a DJ and disco lights. We sat down and Tocky stayed on my lap for a while and then we were certain he would be off - the Magician/Entertainer entered!! We were a little apprehensive and I thought I could take him out of the room for a little walk if he got scared or upset but to our surprise, he was fine. He just sat and watched! We were so relieved!
After a segment of gags and 'magic', the music started up again but this time, hubby and I got up to dance. Tocky wanted to be picked up for a dance at first but that was fine - daddy could do that whilst I embarrassed myself doing The Gangnam Style for the first time in public - oh the shame!!! I suppose it wasn't too bad as the diabetes nurse(DN) was doing it too and hubby tried whilst holding Tocky!!
Then the lights came on and The Entertainer set the kids up for a game of pass the parcel. Now Tocky has never played before as he's never been to a party so the DN asked hubby to sit with him in the circle. The music stopped on Tocky first and he helped daddy open the layers and got a prize!! After that, daddy sat in position whilst Tocky decided to run around The Entertainer and inside the circle all the kids were sitting in, stopping and looking at them all!! He was so confident!! We would never have believed he could be like this for his first party!! The DN and Tocky's Consultant were all watching him and were so pleased seeing he was happy and confident. We were so proud.
The disco commenced and then we went into another room to have some food. Strange how all the kids were in the same boat - testing, injecting and bolusing but it kind of feels nice being around others going through the same thing. We had sandwiches, crisps and banana cake which was absolutely delish!
Going back into the disco, we were told Santa would be arriving and again, we got a little worried but decided to just get on with it and wait and see.
As Santa entered, we told Tocky it was Santa. We had been reading him Christmas stories about Santa for a while now so he kind of knew what Santa was. He looked and carried on playing! Again, so proud of our boy coming such a long way.
His name was called out for a present but we thought we might be pushing our luck to expect him to get it so I went.
As the party ended, we went around the room saying our goodbyes - first to my friend who has 4 beautiful boys and the eldest has Diabetes, then we saw the Consultant. Now bearing in mind Tocky doesn't like being touched by her in clinic, she reached out for a cuddle and he cuddled her back! I then asked him to blow a kiss and he did!! But then, I nearly fainted because our scared little Tocky kissed her on the cheek!!! KISSED HER!!! She was so happy as were we but in shock!!! We said bye to the Psychologist, who is lovely but we've only met with him once but see him around in clinic appointments, then said bye to the Diabetes Nurses who also got kisses!!! Where's my boy?! This child is totally different!!!! Everyone was so happy to see this change in him but we were over the moon and so proud!
We called the in laws as soon as we got home as they were expecting us to be home 10 mins after we got to the party!! They were so relieved to hear that he was OK.
Luckily, his BM was good after the party as we had to what I call 'guesstimate' his carbohydrates. I was certain the banana cake would send him sky high but he was good.
Since the party, Tocky has shown a lot more confidence at toddler sessions and seems to be learning to share a bit better. After all, he shared the party with all those kids and parents.
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Monday 15 December 2014
Monday 3 November 2014
Pump and CGM
So, as I mentioned before, not long after leaving hospital, Tocky was put on an insulin pump. We were so glad he was able to as being so young, it was difficult to ensure he ate enough food to cover the insulin dosage administered by pen. By pen, the smallest amount is 0.5 whereas with a pump, it can be as little as 0.025.
We went to hospital to meet with the trainer, John from Medtronic, who is also T1. He took us through everything step by step but we knew we would need to refer back to training material as there was so much to take in. We felt confident that we could function the pump but also terrified of doing something wrong. We programmed the pump to the settings the Endo had suggested for Tocky and we were told to practice with saline solution for a week. This was so we could get used to inserting the infusion sets, filling reservoirs, setting and changing basal rates, bolus carbs, etc...(will explain in further posts)
Tocky's pump is a Medtronic Paradigm Minimed which you use with a Mio infusion set, a reservoir and insulin. You fill the reservoir with insulin and attach it to the infusion set. The soft cannula is inserted into the skin via the integrated insertion device all within the infusion set. It is quite difficult to explain but there are lots of examples online if anyone would like to see! The reservoir is then inserted into the pump and insulin is administered through tubing. This has to be changed every 2-3 days but with Tocky being such an active toddler, it can vary! Sometimes it can get blocked with blood which blocks the insulin going through which can result in high blood sugars. There's just so much to do and remember!!
Tocky also wears a CGM (continuous glucose management) Enlite sensor. The CGM helps avoid highs and lows as the sensor takes a blood glucose (BM) reading every 5 mins. It also displays graphs and arrows which indicate if blood sugars are rising or dropping too fast. Although the sensors are a godsend (especially at night) they are not 100% accurate. This can occur if insertion is incorrect, if the sensor has been knocked under the skin or if you are lying on it. I'm sure there are other reasons but we have had experience of these.
Again, the sensor has an electrode which is put under the skin via an inserter. My poor Tocky has both these insertions currently in his bottom although they are preferred in the stomach but because he is so young, he doesn't have enough fat on his tummy. A transmitter is attached to the sensor then all taped down. The sensor works wireless with the pump to produce results - it's all very clever!
When we first learned how to do the insertions, hubby and I tried them on ourselves to experience what Tocky would experience. They didn't hurt but Tocky's skin could be more sensitive than ours but generally the insertions are painless.
The sensor should last around 6 days so doesn't need changing as often as the infusion sets. It may need changing more often some weeks as it can be way out with what BM readings it picks up to what the BM actually is. For example, the pump may alert us to say the blood reading is a 3.0 which is classed as hypoglycemic (low blood sugars) where in actual fact after a finger prick test the BM is 7.0. Aaaaaarrrgghhhh!! That's when I get sleepless nights!
As a whole, we are proud of how Tocky has coped with wearing the devices and never messes around with them. He used to wriggle about in the early days when inserting but now he just lies still for us. He wears his pump around his waist in a pump pouch (homemade ones might I add!) and it just doesn't bother him. We are lucky to have such a happy, carefree child now that he has overcome his anxieties too. Hope he feels as lucky as we do!
Next post will be about hypos, hypers and the dreaded ketones!!
We went to hospital to meet with the trainer, John from Medtronic, who is also T1. He took us through everything step by step but we knew we would need to refer back to training material as there was so much to take in. We felt confident that we could function the pump but also terrified of doing something wrong. We programmed the pump to the settings the Endo had suggested for Tocky and we were told to practice with saline solution for a week. This was so we could get used to inserting the infusion sets, filling reservoirs, setting and changing basal rates, bolus carbs, etc...(will explain in further posts)
Tocky's pump is a Medtronic Paradigm Minimed which you use with a Mio infusion set, a reservoir and insulin. You fill the reservoir with insulin and attach it to the infusion set. The soft cannula is inserted into the skin via the integrated insertion device all within the infusion set. It is quite difficult to explain but there are lots of examples online if anyone would like to see! The reservoir is then inserted into the pump and insulin is administered through tubing. This has to be changed every 2-3 days but with Tocky being such an active toddler, it can vary! Sometimes it can get blocked with blood which blocks the insulin going through which can result in high blood sugars. There's just so much to do and remember!!
Tocky also wears a CGM (continuous glucose management) Enlite sensor. The CGM helps avoid highs and lows as the sensor takes a blood glucose (BM) reading every 5 mins. It also displays graphs and arrows which indicate if blood sugars are rising or dropping too fast. Although the sensors are a godsend (especially at night) they are not 100% accurate. This can occur if insertion is incorrect, if the sensor has been knocked under the skin or if you are lying on it. I'm sure there are other reasons but we have had experience of these.
Again, the sensor has an electrode which is put under the skin via an inserter. My poor Tocky has both these insertions currently in his bottom although they are preferred in the stomach but because he is so young, he doesn't have enough fat on his tummy. A transmitter is attached to the sensor then all taped down. The sensor works wireless with the pump to produce results - it's all very clever!
When we first learned how to do the insertions, hubby and I tried them on ourselves to experience what Tocky would experience. They didn't hurt but Tocky's skin could be more sensitive than ours but generally the insertions are painless.
The sensor should last around 6 days so doesn't need changing as often as the infusion sets. It may need changing more often some weeks as it can be way out with what BM readings it picks up to what the BM actually is. For example, the pump may alert us to say the blood reading is a 3.0 which is classed as hypoglycemic (low blood sugars) where in actual fact after a finger prick test the BM is 7.0. Aaaaaarrrgghhhh!! That's when I get sleepless nights!
As a whole, we are proud of how Tocky has coped with wearing the devices and never messes around with them. He used to wriggle about in the early days when inserting but now he just lies still for us. He wears his pump around his waist in a pump pouch (homemade ones might I add!) and it just doesn't bother him. We are lucky to have such a happy, carefree child now that he has overcome his anxieties too. Hope he feels as lucky as we do!
Next post will be about hypos, hypers and the dreaded ketones!!
Saturday 25 October 2014
Tocky's anxieties
So we have all had a day at home today as Saturday's are usually visiting the in laws day but father in law has a cold and doesn't want Tocky to catch it!
So far today, Tocky has had a good day with BM's of 6.3 before breakfast, 5.4 before lunch and 8.2 before dinner! Yay! Let's hope it stays that way through the night!
Right now, he's not wearing a sensor. Although they are great, they're only great when they work! For instance, early this morning around 4am I was awoken by an alarm alerting me he was 2.9 and dropping. I checked his BM and he was 9.5!!! Arrrgghhhh!!! This happens quite often but usually because he is lying on the sensor but this one has been playing up since Friday morning so I think he needs a new one on this evening.
So, back to last year, after being poked, prodded and pricked by various medical professionals whilst in hospital, we began to notice how anxious Tocky had become with normal situations. For instance, he would scream the place down if he was having his feet measured for new shoes. We put this down to all the blood being taken from his feet. Even now, he only lets hubby and in laws touch his feet (and me of course!)
Whilst visiting nannie and gangan (as he calls them) if anyone came round to see him, he would cry but they didn't care - most people understood that what he had been through caused him not to trust anyone and feel like someone was going to do something to hurt him.
It only used to annoy me and still does when in the company of some, they would say "oh, he's a cry baby" or "all he's done is cry since he's been here"! Well to them, I would like to say SHUT THE HELL UP AND THINK!!!!!!
I had also been taking him to weekly toddler sessions and even there, he would cry and cling onto me for about 15 mins but once he saw children playing, he would go off and play. Not as bad as hospital but anxiety was there.
Anyway, these anxiety spells would worsen when it was time for our Endo appointments. Wow, they all knew Tocky was in - they could hear him! He would be hysterical as soon as we got to hospital. In fact, to get to hospital, we drove past an Asda and he knew then where we were going which would upset him.
Around his December appointment, our Endo suggested Tocky may benefit from play therapy so that he would associate the hospital with positive things. We were open to try anything as we hated seeing him so upset for something that would be a regular thing. We were introduced to Jo, a play therapist, after Tocky's appointment and he had a little play in the side area of one of the wards. After Christmas, we started having weekly play sessions. At first, he would get a little upset but then calm down. By March this year, he showed signs of much improvement as we changed the sessions to once fortnightly.
By his next appointment in April, Tocky was a little calmer but freaked out when the Endo checked his sites (where his infusion and sensor are inserted) for lumps and bumps (lumps under skin where insertion sites are reused causing scar tissue) which are all clear I'm glad to say. He also has an aversion to one of the Diabetes Nurses who is lovely but she tries to stay away from him!!!
Skip again to his most recent October appointment and I'm sure I have a different son. He went into the nurses room as always to check his Hba1c (3 monthly blood test measuring glucose average) and nothing. He just went in, sat down and played with his daddy!! OMG he was finally fine!!! And then in to see the Endo, no crying but a little moan when she checked his sites (still clear) and he even waved bye!!!
We were so proud of him. All the stress he had experienced was finally on it's way out. We are so grateful to the play therapist/s who helped him gain confidence as it really made a dramatic difference. He's even been running into toddler sessions since around April!
Play therapy involves the child facing his fears in certain situations which cause him stress as well as just play. Tocky used to get upset whilst being weighed, measured and having his blood pressure taken. Jo tried to introduce toys into the room where these were done so that Tocky would disassociate the tests. After a few months, he happily went into the room to play and have all his tests done before his clinic appointment to avoid further stress on the day.
If anyone's children suffer with anxiety or stress related to hospitals or doctors, I would highly recommend enquiring about play therapy. It has worked wonders!
So far today, Tocky has had a good day with BM's of 6.3 before breakfast, 5.4 before lunch and 8.2 before dinner! Yay! Let's hope it stays that way through the night!
Right now, he's not wearing a sensor. Although they are great, they're only great when they work! For instance, early this morning around 4am I was awoken by an alarm alerting me he was 2.9 and dropping. I checked his BM and he was 9.5!!! Arrrgghhhh!!! This happens quite often but usually because he is lying on the sensor but this one has been playing up since Friday morning so I think he needs a new one on this evening.
So, back to last year, after being poked, prodded and pricked by various medical professionals whilst in hospital, we began to notice how anxious Tocky had become with normal situations. For instance, he would scream the place down if he was having his feet measured for new shoes. We put this down to all the blood being taken from his feet. Even now, he only lets hubby and in laws touch his feet (and me of course!)
Whilst visiting nannie and gangan (as he calls them) if anyone came round to see him, he would cry but they didn't care - most people understood that what he had been through caused him not to trust anyone and feel like someone was going to do something to hurt him.
It only used to annoy me and still does when in the company of some, they would say "oh, he's a cry baby" or "all he's done is cry since he's been here"! Well to them, I would like to say SHUT THE HELL UP AND THINK!!!!!!
I had also been taking him to weekly toddler sessions and even there, he would cry and cling onto me for about 15 mins but once he saw children playing, he would go off and play. Not as bad as hospital but anxiety was there.
Anyway, these anxiety spells would worsen when it was time for our Endo appointments. Wow, they all knew Tocky was in - they could hear him! He would be hysterical as soon as we got to hospital. In fact, to get to hospital, we drove past an Asda and he knew then where we were going which would upset him.
Around his December appointment, our Endo suggested Tocky may benefit from play therapy so that he would associate the hospital with positive things. We were open to try anything as we hated seeing him so upset for something that would be a regular thing. We were introduced to Jo, a play therapist, after Tocky's appointment and he had a little play in the side area of one of the wards. After Christmas, we started having weekly play sessions. At first, he would get a little upset but then calm down. By March this year, he showed signs of much improvement as we changed the sessions to once fortnightly.
By his next appointment in April, Tocky was a little calmer but freaked out when the Endo checked his sites (where his infusion and sensor are inserted) for lumps and bumps (lumps under skin where insertion sites are reused causing scar tissue) which are all clear I'm glad to say. He also has an aversion to one of the Diabetes Nurses who is lovely but she tries to stay away from him!!!
Skip again to his most recent October appointment and I'm sure I have a different son. He went into the nurses room as always to check his Hba1c (3 monthly blood test measuring glucose average) and nothing. He just went in, sat down and played with his daddy!! OMG he was finally fine!!! And then in to see the Endo, no crying but a little moan when she checked his sites (still clear) and he even waved bye!!!
We were so proud of him. All the stress he had experienced was finally on it's way out. We are so grateful to the play therapist/s who helped him gain confidence as it really made a dramatic difference. He's even been running into toddler sessions since around April!
Play therapy involves the child facing his fears in certain situations which cause him stress as well as just play. Tocky used to get upset whilst being weighed, measured and having his blood pressure taken. Jo tried to introduce toys into the room where these were done so that Tocky would disassociate the tests. After a few months, he happily went into the room to play and have all his tests done before his clinic appointment to avoid further stress on the day.
If anyone's children suffer with anxiety or stress related to hospitals or doctors, I would highly recommend enquiring about play therapy. It has worked wonders!
Friday 24 October 2014
The Beginning
Firstly, my son's name isn't Tocky!! This is one of our nicknames for him! He is the most wonderful child you could ever know, so imagine how awful it was to find out our gorgeous one was poorly.
So it all started last year when he was 11 months old. We had signed him up for a block of Baby Yoga classes at one of our local centres and his first class was on Saturday 2nd March 2013. My hubby and I looked forward to it as he was at work in the week and missed out on seeing Tocky doing classes (previously Baby Massage)
Tocky was not happy :( He was never a crying or moaning baby and we had no problems with him teething, sleeping, weaning, breastfeeding, etc... so we just put it down to him having an off day.
Sunday 3rd March 2013, we went to visit my sister and again, Tocky was not happy. He didn't want to play or eat or just be there at all. Again, we just put it down to him being tired as he was fine and seemed himself once home.
Monday 4th March 2013 - the worst day of my life but I didn't know it! Tocky was again moaning, clingy, sleepy, off food but he was teething at the time and I thought he had toothache. I gave him some paracetamol and he went down for a nap about 10:30am. We also thought he may be a little constipated as he hadn't done a poop since Saturday and was usually regular once or twice a day.
He woke around 12pm and seemed ok but not his usual chirpy self. He ate some lunch and then around 3pm, was moaning again. This time, I gave him some Gripe Water (and a capful for myself) for his possible tummy ache. He napped down again and woke around 5pm.
He looked quite peaky and off colour and when my husband came home from work, he said that Tocky looked unwell so we decided to take a trip to A & E at around 6pm.
After a 6 hour wait (yes 6 hours) we were finally seen and then moved to an assessment unit as it was initially thought he was just constipated and a doctor was needed to confirm this.
After a doctor had assessed him, a female doctor came and advised we should have his urine and blood checked as a precaution and we were happy for anything they could do - we just wanted our boy well.
The doctor came back and advised that Tocky was most likely in Diabetic Ketoacidosis (DKA) which can be fatal and advised they needed to push fluids as his body was dry internally and admit him as a matter of urgency. We were in shock! How could this happen so quickly? Whilst they went to fetch a drip, Tocky's breathing became laboured and his eyes rolled :( I called for help and doctors and nurses came rushing and pushed fluids manually as he was slipping into a diabetic coma. We couldn't believe it! There was no history in either of our families and Tocky had no symptoms including thirst and more nappy changes due to increased urination.
He was then transferred to HDU and stayed in hospital for a week. Hubby and I stayed with him and the poor little thing had so much done to him - bloods, bloods and more bloods!!! He had fingers, heels and toes pricked for blood, he had no spaces left!
We met the Diabetes Nurses, Dietician and Endos and they were all so lovely. Hubby and I had soooo much to learn! We actually decided to start doing finger pricks and injecting Tocky whilst he was still in hospital under the supervision of the nurses just to have confidence when we went home.
My in laws were so upset when they heard how ill their only grandson was. They were with us everyday and helped with bringing us food, clean washing, and whatever else we needed and more. So lucky to have them as in laws - I know many aren't so lucky!
Whilst in hospital, we were advised that Tocky would be best suited to have an insulin pump. We were told how it would work and we were happier than injecting him on a daily basis. We would attend a training session about a week after leaving hospital and would then be given a pump.
So, when Tocky was discharged, we were so scared as we didn't have that constant back up of nurses to help us. Technically though, we did as our Diabetes nurses were available 24/7 but it was still scary. After the first day, we felt a little better and each day got even better. Then the time came to learn everything about pumping. AARRGGGHHHHH!!!!!!! Only just got our heads around injections, ketones, correction dose, carb counting, etc....
Thursday 13th March 2013 - We attended Pump training with the Medtronic Trainer who also wore a pump - he was soooo lovely and easy to talk to. Tocky wore his pump for 1 week with just a saline solution for us to practice with and then we would return to clinic to have actual insulin in the pump. He was to return a week later - on his 1st birthday!! Wow - what a present!!!
Skip a few months and after using and getting used to the pump and meeting with the nurses and endo, we were told that Tocky had been approved for a sensor (CGM) Again, we were pleased but that meant MORE LEARNING!!!!!!!
July 2013, we had the sensor and it was brilliant!! We put all the settings into the pump as it works wireless with the sensor and alerts you when blood sugars are too high, too low, any errors, peaks and lows before and after food, etc... it was brilliant!! Poor Tocky now had 2 things on his bottom - infusion set and sensor but it never seemed to bother him, only us.
Next posting will be about he coped with situations after hospital - and it will probably be just as long!!!
So it all started last year when he was 11 months old. We had signed him up for a block of Baby Yoga classes at one of our local centres and his first class was on Saturday 2nd March 2013. My hubby and I looked forward to it as he was at work in the week and missed out on seeing Tocky doing classes (previously Baby Massage)
Tocky was not happy :( He was never a crying or moaning baby and we had no problems with him teething, sleeping, weaning, breastfeeding, etc... so we just put it down to him having an off day.
Sunday 3rd March 2013, we went to visit my sister and again, Tocky was not happy. He didn't want to play or eat or just be there at all. Again, we just put it down to him being tired as he was fine and seemed himself once home.
Monday 4th March 2013 - the worst day of my life but I didn't know it! Tocky was again moaning, clingy, sleepy, off food but he was teething at the time and I thought he had toothache. I gave him some paracetamol and he went down for a nap about 10:30am. We also thought he may be a little constipated as he hadn't done a poop since Saturday and was usually regular once or twice a day.
He woke around 12pm and seemed ok but not his usual chirpy self. He ate some lunch and then around 3pm, was moaning again. This time, I gave him some Gripe Water (and a capful for myself) for his possible tummy ache. He napped down again and woke around 5pm.
He looked quite peaky and off colour and when my husband came home from work, he said that Tocky looked unwell so we decided to take a trip to A & E at around 6pm.
After a 6 hour wait (yes 6 hours) we were finally seen and then moved to an assessment unit as it was initially thought he was just constipated and a doctor was needed to confirm this.
After a doctor had assessed him, a female doctor came and advised we should have his urine and blood checked as a precaution and we were happy for anything they could do - we just wanted our boy well.
The doctor came back and advised that Tocky was most likely in Diabetic Ketoacidosis (DKA) which can be fatal and advised they needed to push fluids as his body was dry internally and admit him as a matter of urgency. We were in shock! How could this happen so quickly? Whilst they went to fetch a drip, Tocky's breathing became laboured and his eyes rolled :( I called for help and doctors and nurses came rushing and pushed fluids manually as he was slipping into a diabetic coma. We couldn't believe it! There was no history in either of our families and Tocky had no symptoms including thirst and more nappy changes due to increased urination.
He was then transferred to HDU and stayed in hospital for a week. Hubby and I stayed with him and the poor little thing had so much done to him - bloods, bloods and more bloods!!! He had fingers, heels and toes pricked for blood, he had no spaces left!
We met the Diabetes Nurses, Dietician and Endos and they were all so lovely. Hubby and I had soooo much to learn! We actually decided to start doing finger pricks and injecting Tocky whilst he was still in hospital under the supervision of the nurses just to have confidence when we went home.
My in laws were so upset when they heard how ill their only grandson was. They were with us everyday and helped with bringing us food, clean washing, and whatever else we needed and more. So lucky to have them as in laws - I know many aren't so lucky!
Whilst in hospital, we were advised that Tocky would be best suited to have an insulin pump. We were told how it would work and we were happier than injecting him on a daily basis. We would attend a training session about a week after leaving hospital and would then be given a pump.
So, when Tocky was discharged, we were so scared as we didn't have that constant back up of nurses to help us. Technically though, we did as our Diabetes nurses were available 24/7 but it was still scary. After the first day, we felt a little better and each day got even better. Then the time came to learn everything about pumping. AARRGGGHHHHH!!!!!!! Only just got our heads around injections, ketones, correction dose, carb counting, etc....
Thursday 13th March 2013 - We attended Pump training with the Medtronic Trainer who also wore a pump - he was soooo lovely and easy to talk to. Tocky wore his pump for 1 week with just a saline solution for us to practice with and then we would return to clinic to have actual insulin in the pump. He was to return a week later - on his 1st birthday!! Wow - what a present!!!
Skip a few months and after using and getting used to the pump and meeting with the nurses and endo, we were told that Tocky had been approved for a sensor (CGM) Again, we were pleased but that meant MORE LEARNING!!!!!!!
July 2013, we had the sensor and it was brilliant!! We put all the settings into the pump as it works wireless with the sensor and alerts you when blood sugars are too high, too low, any errors, peaks and lows before and after food, etc... it was brilliant!! Poor Tocky now had 2 things on his bottom - infusion set and sensor but it never seemed to bother him, only us.
Next posting will be about he coped with situations after hospital - and it will probably be just as long!!!
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