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!
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Saturday 25 October 2014
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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