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.