Month: December 2018

I can’t even remember where I was up to with the last blog post, but I do know that since then, we have had our first Christmas with Diabetes.

In the lead up, I hadn’t been thinking about it really, trying not to OVERTHINK it I mean, just shut it out! lol

We just had my Mum here, and KW’s Dad, us and the boys. It was lovely! Perfect! I wasn’t worried about anything that Beau might eat as we were prepared to let him go for gold and give him any insulin corrections (extra injections) as needed.

Funnily, on Christmas eve one of the Grandparents had asked if Beau could have something and I said no. Cooper was there and he said ‘But he can have treats tomorrow, that’s what the Dr at the hospital said. Birthday parties and Christmas are ok to have treats!’ Yes, my darling boy – you are right!

Anyways so on actual Christmas day we tried to give Beau a normal breakfast. Over the week leading up to Christmas he had been quite low which (in our 3 week journey) was quite unusual but he has a runny nose and wasn’t eating as much as normal. So he didn’t really eat his breakfast, then he had some scorched almonds, I mean to be honest, I couldn’t tell you what else he ate at what time! It was so crazy to not be worried!!!! Quite a relief!!! Better not get too used to it though!! We just kept scanning him and he actually spent most (or much!) of the day, in the range of 4-8!

Yay!

Although, I forgot to mention that on Christmas eve we had a hiccup…

The CGM (Continuous Glucose Monitor) disc in Beau’s arm lasts for two weeks and we had heard that the readings were quite unreliable for the first 24 hours. So on the 23rd we put the new sensor on his other arm, and continued to read off the old one until in ‘ran out’ on the 24th.

The morning of the 24th we took the old disc off and it revealed quite a red hard lump in the centre where the sensor was in his arm. It was infected! This could explain the low/random readings! Maybe even his runny nose?

I emailed a picture to the Paeds Diabetic team and then called them an hour or so later and they were arranging a Dr at the hospital to give us a script for antibiotics. Phew! Panic averted.

They were really back pocket antibiotics to use if it became worse as the next 2 days were Christmas and Boxing Day so nothing was open. I went to get the script and had 2 completely contrasting conversations with 2 staff at the chemist.

One was with the girl behind the counter who said at least Beau wasn’t 21 when he was diagnosed, like her friend who had to stop eating all this food. (Quite a myth actually, Beau’s diet hasn’t changed too much as yet, we are just ensuring (OR TRYING to make sure!!) he gets the right amount of insulin for the food he is eating.)

The second was with the pharmacist, who may have overheard the previous conversation but somehow brought up the Hb1Ac number and how we needed to bring that down to keep a close watch on his eyes and kidneys. She said ‘It’s all very well being diagnosed with Diabetes at 2, but if you have problems with your eyes and kidneys 30 years later, you’re only 32! But if you get diagnosed at 30, then you’re already 62 when having these issues.’

I found her great to talk to but I must admit when I walked out, I began to panic… this is all on us! WE have to get that number down. It is KW and ME. We have to work so hard to try our best (which we are doing!) to do this now for Beau so that he can live as normal, happy, healthy life as possible.

I guess at this point, the realisations keep happening. Like I said a few posts ago, this isn’t a short term medication thing to fix it. It is a disease with no cure. I guess you, the readers know that. And I know it too, but when it’s my beautiful baby boy with an incurable disease it can sometimes get overwhelming!

But he is great, he has been great. Such an incredible wee boy just getting used to his new normal. Getting woken up in the night to eat some of a candy cane then toast, while watching Moana on the iPad is just becoming something that happens every couple of nights.

We are tired. We are managing this together, really being such a good team, but man, we are tired! (I know I have previously covered this, but a warning – I will still repeat it!) getting up to check him a few times every night is ok and we do share that part a bit, but the treatment means being awake for about 45 mins and that can be hard!

Tonight we had quite a significant low in the early evening. He usually has them during the night, so we can’t really see the symptoms as clearly as we have to wake him up! But we gave him insulin before dinner and then he didn’t eat his dinner (of course!) then we gave him toast, which he didn’t eat (all these bad toddler habits we learnt the hard way with Cooper a million years ago that we haven’t done in years and years! But we need Beau to EAT THE CARBS WE SAID HE WOULD EAT!!!!!) and then a wee bit of banana, so then he crashed. He was following me crying, then I sat on the floor to cuddle him and his eyes started to shut so I quickly scanned him ‘LO’ it said, so I skin pricked him ‘2.8’ I needed to get some candy cane into him.

Meanwhile, Cooper is standing there ‘Why does Beau get a candy cane and I don’t? You love him more than me. He always gets the treats and you are always in bed with him.’ Not now my Coops, not now. I know it must be so tough for you buddy and we are all trying our very best but obviously it’s not good enough right now. My darling big boy, we are so sorry we will make it up to you when we can, in the meantime, stop being a punk!

Anywho, Beau was crashing hard and it was freaking me out, he got sweaty and so droopy. He was crying and moaning and asking for chocolate, so then I gave him a wee bit before getting him onto something more substantial (shapes then a yoghurt!) he had dropped so hard as he had had the insulin on board for about an hour with hardly any carbs to match. Even though we didn’t give him a big dose of insulin. ARGHHHHHH.

He had a shower, which he didn’t like at all, then he came right and got lots of energy right on bed time! It’s so bloody hard to get this right!!

I can’t say enough how wonderful the Paediatric Diabetes team at the hospital are. They are just incredible. When I upload Beau’s data from his scanner, they call to discuss any changes etc or just to check in etc, and they are so nice! They keep saying we are doing so well, and it means the world to hear that! I don’t feel like we are, but maybe at times we are!

When I looked at Beau’s data yesterday he had about 800 readings in the right range, about 450 below it and 450 above it. Not too bad I guess, still early days and there is room for improvement!!!!!

He is still in the ‘honeymoon phase’ making some of his own insulin, so tonight we have dropped his long lasting insulin again to hope that we stop the overnight hypos (lows). The injections are measured in units, and you can give them in half unit increments. Beau is so small, and I guess producing some of his own so his wee jabs have not much at all in them! The long lasting insulin was 4 units when we left hospital and now we are trying 2 units tonight! The others vary depending on food eaten, but it’s usually between 0.5 of a unit to 2 units before meals. They are such teeny tiny amounts it’s crazy!

We are off camping on Sunday just for 3 nights. I’m not a camper, we are totally unprepared (but will be prepared for anything Diabetes related!!!) so I am quite anxious about how that’s all going to go! At least we aren’t going too far from Christchurch, so the hospital is close-ish. Wish us luck!

Our gorgeous little candy cane lover on Christmas day!

The 3rd of December 2018 will forever be etched in our memories as Beau’s ‘Diabetes Anniversary’. Sucky anniversary! I have been thinking about it a bit today as it is our ‘2 week anniversary’. I thought this morning, 2 weeks ago today I was at work etc etc, our lives were normal, Beau was ‘fine’!

But we can’t live in the past, so here we are today! Beau is 2.5 years old today exactly! This morning Facebook memories shared with me some super cute pictures from his 6 month date, and 1.5 year date. Super grateful for our delicious wee boy!

What’s new this week? Well, we had our first Diabetes Clinic on Friday. We were second in at 8.40 so that was a good first induction.
First Beau was weighed by the nurse, and his height measured. Funny as we were only in hospital last week where they recorded that info! But, amazingly, he has put on 400g since then! So that is good news!

Then we went back to the waiting room before being called into the diabetes nurse room where Beau had a skin prick done to test his HbA1c level, which doesn’t mean a lot to us now, but will start to give an overall look into how his insulin treatment is working with 3 monthly averages of his BGL (Blood Glucose Levels). I actually find this quite confusing, but it’s to do with the long standing issues of having high glucose. In the next few months this will become very important to us, but right now, when they talk about it, it still seems confusing!

The endocrinologist, who is a Dr that specialises in hormoney type things (I just googled that, I thought it was a diabetes Dr! lol!) Then saw us, for quite a while which was good as we really needed to check how we were going with things now that we actually know what all the education in hospital was teaching us!

We were worried our insulin injections weren’t working well consistently as sometimes there was a drop of insulin left on his bum, sometimes there was a bit of blood and there are a couple of bruises! Thankfully, he said not to worry and we were doing it all right, these things happen all the time as the needle might get a blood vessel or something! Phew!

There were a lot of questions from us (me!) cos ya know, no question is a dumb question!

We really really need to get Beau on an insulin pump ASAP as his BGLs are still so high and low! Unfortunately, there is a back log and a long wait. Seems so unfair when he’s only 2 and his wee body is still obviously struggling.

Lastly we chatted with the dietician just to check a few things that we are doing, so that was helpful too!

We are having quite a bit of trouble keeping Beau’s glucose levels in the range of 4-8 and he’s usually waking up quite low and in need of sugar, then he has insulin before his breakfast and his BGL all of a sudden shoots up really high! The Dr was saying this is what we need to focus on, he has a different amount of insulin already for this breakfast spike than he does for lunch and dinner but for some reason this is still happening!

It’s so frustrating for someone like me who likes to get things right and do what I am told etc etc for Beau’s BGLs to be low and high and then low and high again and not really in the right zone for very long at all. I always feel like I am failing! I know I am not though, and KW and I are working so hard to do everything the Drs and Diabetes team say and keep Beau as healthy as we can but apparently, it’s the ‘nature of the beast’ people keep telling us.

Sometimes I can feel myself getting fed up with it, and that I’m not good enough to be a ‘Diabetes Mum’ but other times I’m all good and I see it as a challenge to try our best to make it to the range. Really, we just keep on keeping on!

KW has been amazing, I honestly feel like he is the best person ever to have in my team. We are working so well together and this is making it much easier to deal with! (Don’t get me wrong, we still bicker about where the BGL reader is, or ‘have you not given him his shot yet?’ etc) but wow, I must say, I’m beyond grateful to be in this with him.

And Beau… well my beautiful baby boy Beau is blowing us (and everyone!) away with his amazingness! He is so good and lays down for his insulin shots and most of the time takes them without any fuss or anything! It’s pretty incredible to think our 2 and a half year old crazy baby boy, who had barely had any injections previously, and now has 4 daily (plus skin pricks) is handling it all like a boss! If I ever need to find strength from anywhere, he’s right there. Showing me how to smash it!

As for Cooper, he has taken to reading the BGL scanner really well so he loves going and scanning Beau and reporting back to us what the number is, and what the arrow is doing (it shows which way the glucose levels are headed… down, up, steady etc) He is beginning to feel even more left out than usual (as Beau is such a Mummy’s boy) so the school holidays have come at a really good time (again!) as today, I dropped Beau at preschool for another couple of hours and took Coops out for a fun Mummy/Son date – to TimeZone (his fave), fluffy (my fave) and to choose a christmas present for his brother! I will continue to work hard to prioritise this time as it’s super important!!

So as I said I dropped Beau at preschool today, and while we were at the mall I got a call from them. Someone had brought in some wee gingerbread cookies to share and Beau got upset when his teacher said she didn’t know if he was able to have it, and she would have to call me. Ohhhh, my heart. My poor baby! I was like ‘Awwww, just give it to him!!!!!!!’ and made a plan – give him the sugary cookie, make him exercise outside after it and I would get there ASAP to give him an insulin shot if needed. It wasn’t. He was fine! (I still went! It was pretty much time for home anyways!)

I spoke to the Diabetes team tonight about it and they (thankfully!) said that it is so important that he doesn’t feel different and is included in things like this where possible! Ah music to my ears, the last thing anyone wants is their children to be left out! Especially because 2 weeks ago, Beau could have (and would have!) smashed a tiny cookie like that without a second thought!)

One thing I did do this week, which I didn’t think I would do for a long time (and feel a bit guilty about!) – I went out! And had….a few….(too many) drinks! KW had the boys so I didn’t need to worry as he was able to handle the highs and lows of Beau’s BGL probably better than me! It really is a team job and I so appreciated the opportunity to let my hair down and celebrate the end of the year with my teaching whānau. (THANKS BABE!!!! Especially for the much needed extra sleep the following day!)

So I realised I had left quite a bit out of the hospital stuff, and that’s ok, cos it was so bloody mind boggling, and now a lot of it has since just merged its way into our lives…

The support we’ve received from our family and friends has been so incredible and it really has meant a lot! One of my friends took Cooper to school each morning we were in hospital which was amazing!

So on the Wednesday morning in hospital, things began to slow down in the hospital, the ward filled up and my anxiety about getting out of there grew! I needed to go home! WE needed to go home! I felt like we were just stuck in our room, or the learning meeting room and that was it! Beau was definitely getting cabin fever and even Moana restarting and restarting was getting old for him. Thankfully, on this day I finally discovered the wifi password! Duuuuuuhhhhh (it’s the small things that we can miss when our brains are busy dealing with something of this magnitude!)

Anywho, so no-one really cared about us, I had to go and chase up his breakfast and the nurses, because Beau couldn’t have his breakfast until he had his insulin, and even though we had the insulin in the room, we had to wait until 2 nurses were there to administer it, or in this case – watch me do it!

It was after 8am by the time this happened and my wee man was hungry!

My Mum and Kodie came in soon after, with coffee (yay, happy dance!) and John came in to work with us again. First up, he gave Mum a quick run down. Of course, we hadn’t really had a chance to fill her in on anything so she was thrown in the deep end! It was good though, man, she coped so much better than I thought she would! She practiced skin pricking on herself and really surprised me!

We had another dietician come and explain to us about counting carbs – and I think this is SO important to understand – it isn’t actually the sugar in foods, it’s the carbohydrate content. So that’s what we look for on labels to calculate Beau’s food. There is a lot of weighing and portion control involved and it’s kinda feeling like learning a new language in a way!

In the afternoon, John spoke to us about how to handle ‘sick days’ with Beau and this is tricky to manage. This is something that petrifies me! Kodie and I straight away make a pact that when Beau is sick, we are both on deck to deal with it. I asked if the hospital admission rates are higher for sick children who have Diabetes and, of course – they are! Uggghhhhhh..

He also told me we were now pretty much joint to the place as we have to take Beau to regular clinics there once we have been discharged from hospital. Eventually 3 monthly appointments on a Friday. Our first one has already been made for the 14th December!

I was OVER hospital (did we cover this?), there were more and more ‘yellow signs’ appearing on doors in the ward warning of ‘contact precautions’,  (arrrggghhhhhhh!!!!) I was shattered and Beau and I really both needed our own surroundings, bed and shower etc.

Finally, we were given the go ahead and could go home!!! Now those of you who know me well, know I don’t like my house very much – well let me tell you, I was soooooooo excited to be home in it haha. Beau was saying that he didn’t want to come home, but obviously he didn’t know what he was saying!

Kodie dropped Beau, Mum and myself off and went to get Cooper from school.

While he was gone, there was a knock at the door. It was Beau’s preschool teacher, his primary carer with her son and some beautiful flowers.

I can honestly not tell you how much this meant to me! I have always struggled with my babies moving to the Over 2’s room at preschool and have missed the closeness we had with their baby teachers, but this gesture meant the world to me!
She came and said whatever we need, they are happy to do and they will welcome Beau back with open arms when we are ready. Then we swapped numbers, because obviously now this relationship between home and preschool is so much more than it ever has been before. There is a huge trust for us to send our baby, our sick baby, to preschool to be looked after by other people for 3 days a week!

In that moment, I knew we would be ok. I really feel I can trust them and I know that they have my baby’s health and best interests at heart.

Kodie and Cooper arrived home, Cooper had a gorgeous bunch of flowers from one of my workmates (honestly, the support and love we have received blows my mind!!!! THANK YOU SO MUCH!!!!!!! We are so lucky!) Kw began looking at some dinner – here begins the measuring and portioning! Good old spag bol, never looked at a jar of pasta sauce so hard!

Well, to be honest, KW sorted it all out, cooked it, then divided it into 4 bowls to see how much a serving size would be etc etc.

I remember in this moment, having a wee quiver – I was so tired. Can we do this forever? How can we? It seems to involve such energy and brain power that I just don’t have. Luckily KW is clever with maths etc and maybe all that kinda stuff can be his job? YUSSSS!! Or not, cos he works full time. And I don’t. And I am not working till next year. So tomorrow I will have to give it a go. Tomorrow will be ok.

It’s now been over a week since that night, so now I can give you a rundown of a day for Beau (SO FAR!) in our Diabetic world…

Wake in the morning:

• skin prick before breakfast
• calculate how many carbs we THINK he might eat for breakfast
• give him an insulin injection for that amount of carbs – based on current BGL (Blood Glucose Levels)  (from a chart made for him)
• wait 10 minutes and he can then eat his breakfast
• skin prick before morning tea to check his BGL
• morning tea snack that is less than 15g of carbohydrates
• skin prick before lunch
• calculate how many carbs we THINK he might eat for lunch
• give him an insulin injection for that amount of carbs – based on current BGL (from a chart made from him)
• wait 10 mins then he can eat his lunch
• skin prick before afternoon tea
• afternoon tea snack that is less than 15g of carbohydrates
• skin prick before dinner
• give him an insulin injection for that amount of carbs – based on current BGL (from a chart made for him)
• AND another insulin shot of a different type of insulin that lasts for 24 hours
• wait and eat his dinner
• skin prick when we go to bed
• depending on if it is high/low etc set alarm for another hour or 2 to check. Or just one/two if it is ok. Repeat till the morning.

So you can see there are lots of things to take into account and think about, as well as factoring in exercise and what to do if his glucose level is high or low.

I wish I could say more about that, but I can’t as we are still trying to figure out what is going on with it all!

Yesterday I went into to school to see my class and team’s final assembly, a production that has been a work in progress for the whole term. I got so emotional at the end, it was bloody brilliant, I was bursting with pride for the kids, and the teachers! It was amazing to see the kids faces when they saw Beau and I in the audience! I miss them. A lot.  I am focusing on my son and our new lives, and WOULD NOT be anywhere else, but I do miss the normality of work and our old lives. I’m missing out on being there and saying goodbye to the kids in my class and clearing it out and spending the last couple of weeks with my amazing co-teachers. It’s ok, life is different right now, I need this sick leave, but I am still a bit sad. I obviously will always and forever happily put my own family before work, well ANYTHING and EVERYTHING, but in the interest of being transparent, open and honest in this blog – these are my thoughts as the 2018 teaching year draws to a close.

Our FreeStyle Libre – CGM (Continuous Glucose Monitor) arrived last Friday. It took us until Monday night to be brave enough to put it in Beau’s arm! His wee arm is so tiny and each wee disc costs $100 and is supposed to last for 2 weeks. So it’s a big deal!!!! We did it though, and he was super brave! Now he has a white circle disc sitting in the back of his upper arm! All the time! It’s so cool how you just swipe the reader on past, and it takes his glucose levels but it hasn’t been very accurate with reading the same as his skin pricks yet. We are finding we are still needing to skin prick quite a bit. Hopefully this settles down soon!

I guess, his glucose levels are still all over the show so it’s hard to know what’s going on. We had our lowest low (3.2) this morning (Thursday) and it is so hard to manage when he doesn’t like the Dextrose tablets or jellybeans!!  Whyyyy doesn’t this kid like lollies!? Lol we need to sort that out! Or SOMETHING to fix these lows…

I’m beginning to feel like I’m failing this. Failing Beau and his health. Why can’t we get the predictions right for his food intake versus his insulin shots? Why are we having so much trouble with the injections looking like they are working properly? Why was I up like 6 times the night before last monitoring him as he sat around 4, petrified that he would go ‘low’ (he didn’t!) and last night I slept from about 12 and didn’t check him and he actually went low!!!! For fucks sake.

I am tired.

I am tired in my bones. And in my head. And in my face.

My eyes can barely open in the mornings at the moment and I need 2 triple shot flat whites a day to break even with the normal world.

It’s ok, I’m ok and we will be ok. But it is hard. I guess last week this was all a crazy new ride, and almost like medication for a week, you know, antibiotics.

Maybe this week, it’s real. It’s ongoing. It’s forever. It just might have dawned on me and it’s a lot. It really is a lot.

On Monday Beau and I went to his preschool christmas show, it was cool and afterwards, he wanted to play outside. This was actually another big wobble for me, as it was shared kai…. It broke my heart that he couldn’t have any food. I wasn’t ready and hadn’t factored any different intake of food or anything! So I distracted him and we played for a bit outside. I really felt sick here, that my precious boy was missing out on all the food others were taking for granted.

Tuesday we went back for a play for an hour just to get him back used to the environment and it was fun, he enjoyed it. The paediatric Diabetes team really strongly recommended getting back into a routine as soon as we are able… So these are the necessary steps we needed to take, as much as I resisted, it’s what’s best for Beau!

So….in positive, and ground breaking news, this Mama left her baby at preschool today!!!!! I dropped him about 8.30 with the instructions to do a skin prick soon after and then one just before morning tea. I left his morning tea snack. And I did jobs. On my own. I actually surprised myself I wasn’t worried. I had two of Beau’s awesome teachers messaging me the whole morning and I felt confident that he was in good hands and it was what’s right for us. It felt good to know that it’s positive for Beau to get back into his normal routine, which is preschool without me there! I picked him up 3 hours and 20 minutes later. He was in the sand/water tray and loving it!

I am so proud of all of us! Me, Beau AND the teachers at preschool! It was a victory!

They skin pricked him again (his pre lunch one) and I worked out the amount of insulin and gave him his jab while we were still there so they could see. We are letting him choose where he has them done there, he chose just on the floor in the main playroom. A couple of the other kids came to see what was going on. Beau coped so well, he flinched a bit and I’m not sure if this is hindering some of the injections, as some work well and some don’t seem to? Anyways I guess that’s a question for the clinic tomorrow.

One of his amazing teachers became upset watching Beau have his insulin shot and it was another reminder of just how massive this journey is. What this means for our son. For his whole life. This isn’t just for a week or two. Bless her, and bless you readers for having us in your thoughts recently. It’s a new world and we are grateful for the medicine that will help our boy stay healthy, we are grateful for our wee Team Wixon and we are grateful for our family and friends, workmates and preschool peeps.

Well, here we are… I have never written a personal blog post before, only for school!!

So bare with me…

I am Renee – wife, Mum of 2, teacher, daughter, friend, etc etc. A little bit about me to give you a background to how this started.

I got married to the love of my life, my husband Kodie in 2012, then we had a beautiful boy, Cooper in 2013 and another beautiful boy, Beau in 2016.

After Beau didn’t sleep for ages (ages!!!!!!!), I was diagnosed with postnatal depression and anxiety. Fast forward 18 months and I began receiving treatment for OCD and Generalised Anxiety Disorder at the Anxiety Disorders Clinic.

So you may have picked up, I have a few ‘worry’ issues… (MANY Mums do though, am I right?!)

So of course every time my boys are sick or not right, I google! Many a time I have gone to the Drs with diagnosis already sorted! Hand foot and mouth, Chicken Pox and Scarlett Fever to name a few (all correct might I add!!)

So when my baby Beau had been unwell on and off and out of sorts for a month, I googled ‘sore tummy and excessive thirst’…

Beau suffers from constipation, so Kodie and I had thought that his sore tummy was just that, but then he began needing a lot to drink. One night recently, he asked for 6 drinks! In one night!

I know this because Beau is my little limpet, a delicious little guy who doesn’t like being apart from his Mummy (although is very happy to go to preschool etc, but if I am around, he’s definitely a ‘Mummy’s boy!’) so for much of his life, we have accidentally co-slept. We start the night in our own beds, but 9 times out of 10, he comes into our bed, or now he has a big boy bed – I go into his.

So anywho, I goggled the sore tummy/thirsty stuff and ‘DIABETES’ came up. Of course, I am a worrier (we covered this earlier!) and always think worst case, but I thought ‘nah, surely not!’ but something continued to not be right. I couldn’t shake the word Diabetes.

I took him to the Drs and discussed the sore tummy, headaches, fitful nights, runny nose, sore ears, thirst and she said it was a virus (OF COURSE SHE DID! THEY ALWAYS DO!) that was fine. The next day he developed a temperature. Which he had on and off for the next 4 days. I asked my husband to take him to the Drs again on Saturday (I was at the hairdressers – don’t judge!!!) but he wouldn’t cos of course, he thought I was being dramatic. Read – MUMS KNOW THEIR BABIES!!!!

Beau was reasonably happy when I got home so I didn’t push it, but made an appointment for Monday morning (3rd December) at 8.15 which Kodie promised me he would take him to (I had no one to watch my class, so had to go to work) but I sent him with a list of symptoms and asked for a test for diabetes and also said I could be put on speaker phone.

They called me while there and I chatted to the Dr, a different one this time. Young, very young. And said I wanted Beau to be tested for Diabetes and she said ‘I highly doubt it will be that, but we will do a test.’ I said thank you and hung up, and didn’t think much more about it.

Poor Kodie then had to sit at the Drs with Beau TRYING to get him to pee in something (he’s still in nappies!) which he didn’t do! Kodie (KW I will call him here) took him home, where he peed in the boat thingy and then dropped him at preschool before returning the pee container to the Dr.

He gets in the car to drive to work and minutes later I get a call….

It was the nurse, they have made Beau an appointment for 11.30 to get a referral from the Dr (it was 10.24) instantly I knew it would be bad news.

I raced down to get my amazing friend and colleague to have my class and just walked out with my stuff, didn’t even say bye to the kids!

I rung preschool to warn them I was coming to get Beau and that I didn’t think it was good news, and their manager told me to take my time and drive safe. I was so shaky and nervous it wasn’t a fun drive to the other side of town…

I picked him up with the biggest snuggles and we headed to the Drs, where I had called the nurse back and asked if there was sugar in his urine – which there was.

So we got to the Drs and waited. And waited. Half an hour later the nurse takes us into a room and I ask again about the sugar in his urine and what that might mean, she said she couldn’t really say and to wait for the Dr. I was so eager to hear words that I just wanted an answer. I kept asking and said ‘Do you think it’s diabetes?’ and she said ‘it could be’ and I asked ‘what else could cause sugar in his urine?’ to which she replied, ‘I can’t think of anything else off the top of my head.’ My heart dropped.

Finally the young Dr saw us, she said to me that there was glucose in Beau’s urine and that she was sorry ‘but it was what you thought it might be.’ It was like she was scared to say it, and she didn’t for a while. My heart was beating faster but I just needed to hear what she had to say either way. She said it was likely that Beau had Type 1 diabetes and that it was big news, bad news and that it meant we had to go to the hospital right away.

HOSPITAL. WTF.

So, an anxious Mum, who is scared of germs has to take her baby boy to the hospital. Because he is sick. Really sick. DIABETES SICK. Her baby. My baby. My last wee baby, so my forever baby.

The Dr called the Paeds Registrar at the hospital who asked her to take a skin prick to check the glucose in Beau’s blood then before we went to hospital. I didn’t notice the number that was written on the letter because at the time, it meant nothing to me.

I called Kodie and we met at home to get wipes, nappies and my phone charger and headed straight to ED at Christchurch Hospital.

Ugh, the sight of it. Luckily, because the Dr had already spoken to the Paeds Reg and we had a letter from her, we had to only go to triage and then reception and headed up to the Children’s Acute Assessment Unit.

WTF.

KW, Beau and I were in our own wee room. When we walked in I said to Beau ‘Look, there’s your bed!’ and he said ‘No! My bed’s at home!’ My heart actually broke. A while later a nurse came to put some numbing cream on 3 different sites of Beau – on the inside of both his elbows and one on his hand. And we waited. For over an hour we waited. I tried asking the nurse if it was Diabetes but she said we would have to wait for the blood test.

Then we had to go to the ‘procedures room’ because they don’t like doing nasty things to the kids in their own rooms, so they feel safe going back there, SUCH a good idea! And the Dr and nurse worked together to put a needle in Beau’s hand to take 3 vials of blood. Omgosh, Beau was incredible!! Both KW and I were distracting him and he couldn’t see what they were doing and he was still, patient and calm!

They kept the tube in there and taped it, wrapped it all up on a wee board thing and tried to decorate it with stickers for Beau, who HATED the huge thing sticking off his hand and arm.

We went back to his room and KW left to get our big baby, Cooper from school.

Within 5 minutes of being back in our room, Beau shook his needle out from his hand!!!!! I didn’t realise until the Drs and nurses had to come back for another sample cos one ‘clotted’ luckily, they were able to get enough from another skin prick (again, in the procedures room.)

By this point, I’m getting hot and bothered. Beau is getting restless and Dora is BLARING on the TV in the room, Beau has watched snippets of Moana on my iPad all day and finally Cooper and KW get back from school.

I really can’t tell you how much I think I was asking people if it was Diabetes or not, like… I feel like it pretty much was, but no one had confirmed it to us. Like properly confirmed it. Looking back 5 days later, I am wondering why I kept asking. I guess I was hoping that it would be some other random virus that meant he would be better and we could go home. Somewhere in the haze of this wee room, someone (who? Maybe a nurse?) said that Beau had Diabetes.

Then a whole raft of people came in. The ‘Diabetes Team’. WTF. Who knew. A DIABETES TEAM. They brought this ugly backpack, and John, the Diabetes nurse starts pulling all this stuff out of it explaining each item as he pulls it out. WHAT. THE. ACTUAL. FUCK.

DIABETES.

There’s the ‘lamborghini’ of skin prickers and we are NOT ALLOWED to let the hospital use theirs anymore because they hurt our wee boy, but not OUR OWN one, that hurts less. Our own skin pricker. With needles. Needles. We have to use. On our son. Who has Diabetes…

KW and I were practicing with the skin pricker on ourselves and reading our Blood Sugar Levels.

Cooper was watching and listening with quiet awe. In this moment I realise he has grown so much. He’s 5 and a half and this is his life too. Our lives have changed forever. But this whole time I keep thinking, it’s ok, it’s only Diabetes. It’s not cancer. Cos fuck that. Cancer means death. Diabetes doesn’t, does it?

‘John, is the life expectancy less for people with Type 1 Diabetes?’ ‘No, they can live normal lives, do anything they want, sports, academics etc etc.’ PHEW.

My mind is flip flopping between ‘phew, it’s Diabetes, not cancer!’ to ‘Fuck, it’s Diabetes.’

Anyways, then we get transferred up to the children’s ward. Ward 22. Where we are told we need to stay for at least 2 nights. They tell me I am very good to have caught it so early. I have done well they say.

I think, I googled something, it was bad, and it came true.

I think, how have I JUST finished my treatment for Anxiety and really, my worst nightmare about kids sickness is here. I can’t help but think it is very ironic.

So we meet an older nurse in Ward 22. Pam. She gets out 3 insulin pens. Again I ask if it actually IS Diabetes. Pam says they don’t start insulin treatment if they aren’t sure it’s Diabetes.

Hmmm.

Yet in this moment, she skin pricks Beau and his number is a 5. GREAT! The BSL (Blood Sugar Levels) are supposed to be between 4 and 8, 5 is perfect! They must have it wrong, it can’t be diabetes, as his number is perfect and he hasn’t had any insulin yet. Pam assures me my son is a Diabetic.

I sulk.

Pam whizzes through a crash course on the 3 insulin pens and KW look at each other so puzzled and surely we can’t remember all this!! So many names, different time frames, different doses, different pens!

Luckily, the reason we are in hospital for 2 nights is to learn. John is going to educate us for the next 2 days to look after our son and his new…disease?

I might say here, they said that some kids come in so unwell because the symptoms can be so mild they need IV fluids and IV insulin, lucky our Beau is actually mostly well!

KW and Cooper head home to eat, get us some stuff and we hang out. Moana is on the iPad again. A friend brings me dinner. Another brings me drinks (non-alcoholic of course) I am thirsty but I am scared to drink too much as there is only one toilet for the parents in the 2 children’s wards! Actually. What a joke. What bugs are around here? I cannot cope, but I have to cope because my baby is sick. Lifelong sick.

We hear the positives. We caught it early. He is young. He won’t know any different. It will be easy for us to work on his diet and portions and food routines.

I am trying hard to listen. I remember what they said earlier.

It’s not our fault. NOTHING we could have done to prevent this. My baby’s body has done this itself. It’s an auto immune disorder. Completely random. Bad luck they even say.

Bad luck!

It’s not cancer, but it still sucks.

We don’t get much sleep that first night in hospital. Beau’s BSLs are high. Now I know what those numbers mean. The reading at the Drs was 27.7. It’s supposed to be between 4 and 8. He really is sick.

‘Ketones’ are thrashed around – what are they? Cos they weren’t big when we got to hospital (0.4), but now they are (1.9). They aren’t supposed to be big. I worry, but no one else seems to.

It’s morning time now. Tuesday 4th December. Wow, I was at work this time yesterday, with a normal life. Now I’m in hospital with my baby and needles, so many needles and so much jargon!! And so many different people. There is a Drs name on the door, I have no idea who he is and have to ask someone.

He hasn’t done anything visible for my boy so get your name off my door!

Our nurse is lovely, Chelsea. Young, pretty and Beau loves her. She makes him giggle. I hope we get her again tomorrow!

John tries to get us to take Beau to the ‘Activities room’ it’s kinda like a preschool. We take him in, so we can go into another room with John and a whiteboard to learn about Diabetes. Beau lasts about 40 mins before he needs his Mama. And Moana, always Moana.

We learn, and we listen and we ask questions and we make a good team. We fill in each other’s blanks and I think to myself, ‘hmm, maybe we can do this, hubby and me. I love him! We share looks like ‘WTF does this mean? How can we do this every day?’

There’s a dietician we meet. They say that we will now get a ‘Child’s Disability Allowance’ each week, then they tell us of a contraption we will pay for with this money to save Beau getting skin pricks. It is a disk that sits in his arm (his tiny arm!!!!!) and we can get his BSL from that!

A disability allowance.

Does my child have a disability now?

We hear lots more words and we work hard to stay focused but we are allowed outside at lunch time to get more coffee and take our baby to see the ducks. In the fresh air! Omgosh we were happy to be out there, it was also 28 degrees!

Back inside and more learning. I would write more about it but I just can’t. I couldn’t tell you what it even was.

My friend/boss messaged that she has booked a reliever for me next week too. I am finished work for the year. Just like that. Walked out on my class and now won’t be their teacher again and won’t work with my amazing friends again. I’m sad about it but now calm, thinking that I can put all my focus and energy on Beau (which I was doing, but now didn’t need to worry about school/preschool etc!!)

Because I AM NEVER LEAVING HIM AGAIN!

Another friend brings Cooper to the hospital from school and takes him and Beau out to Hagley Park while we talk about yucky things, like a low that might make Beau unconscious and we have to inject him with a special orange injection. After Beau’s BSLs being so high, this low stuff seems so foreign to us.

We are both scared of it and we don’t like this conversation. I don’t feel well so I have to leave for a bit.

Another friend has met the boys at the park and brings a bag of treats (including dinner, cos ya know, I haven’t eaten much at all!) but there are 2 nurses waiting for KW to do his first insulin shot.

Overwhelming stuff. He did it, and he did so well! I am scared to do mine tomorrow. KW doesn’t like needles so I am so proud of him!

I send KW and Cooper home so Coops can get to bed at an OK time, he’s coping so well but he’s tired. We are all tired.

When they leave, I get ready for bed and jump in next to Beau. He quickly falls asleep and I stare at his perfect wee face and become so upset about his body being so horrible to him! How dare it make him work this hard!?!?! How long has he been feeling sick for?!

John said today that he is still making some insulin himself, but only 10-15% and that eventually, he will be making none, even with the insulin treatment.

There has also been talk about an insulin pump, that they think Beau will be a good candidate for, in March/April next year. It means one needle staying in him always and being changed every 3 days compared to the 4-5 insulin injections he is getting a day now.

Yup, 4-5 shots a day. Plus 6-8 finger pricks.

And do you know, my baby handles them like a boss!

He gets into the position for us to jab him in the bum for his insulin shots and sometimes even stays still for them. Cos you need to count slowly, for 15 seconds with each one. I know. Can you imagine. Did I mention Beau is 2 and a half!!!!!!!! He doesn’t like the skin pricks but you know, here we are 5 days in as I write this and he has got so much better already!

Well that’s quite a bit for my very first blog post! Time for sleep and I’ll fill in the rest of the gaps another day!