It’s now been 169 days since my beautiful baby boy Beau was diagnosed with Type 1 Diabetes.
It feels like it was so recent in some ways, kinda like we took home a newborn and didn’t know what we were doing, and now – we still don’t! It’s still up and down and things change and it’s all random and hard to explain.
People are interesting. Don’t we know it haha! I mean, really interesting. Everyone has their own worlds going on, half (or more!) of which, many people know very little about.
It’s so important to be kind and patient to all others, cos I bet many people are going through something a bit rubbish at the moment, or have been recently or need a compliment or pick-me-up or something!
It’s crazy for me now to TRY to remember life ‘pre-diabetes.’ What did I know about it? How much did I know? Unfortunately it’s too hard for me to remember, but I do know it wasn’t much. I knew Type 1 and Type 2 were different and that Type 2 is more of a lifestyle thing…
I’m getting blown away by some people’s comments. Like that they know someone that was ‘born with diabetes.’ This is not what happens, or might but it’s VERY rare, I take this personally like perhaps this person thinks that we fed Beau too much sugar and that’s how he got diabetes. And I 100% know that I shouldn’t. I know. I know, I know I know. And as I said, I wish I could remember what I knew before…
Type 1 diabetes is either genetic through family members having the condition, or an auto immune condition – which is how Beau got it. His own immune system destroyed the insulin creating cells in his pancreas.
Someone else thought that ‘the stuff I went through last year’ was over and that we were done with it. (Ha! I wish!)
I dunno. I really have had an urge to write, maybe just to moan. I don’t really have many people to talk to (or much time to talk!!) about this who understand.
Even if no one reads this I love writing and venting and typing and thinking and feeling and allowing myself to think more deeply about what is going on for us, Beau… me…
Last weekend Cooper got Strep Throat and had an ear infection. He was really quite sick for a few days. Then, on Wednesday Beau woke up roasting hot with a temp! Argh!
KW had the great idea to test him for Ketones.
1 – What are ketones?
Ketones are chemicals that build up when your body starts to burn fat for energy. The most common cause of ketones in diabetics is insulin deficiency. Without enough insulin, glucose builds up in the blood stream and can’t enter cells. The cells then burn fat instead of glucose. This results in ketones forming in the blood and eventually spilling into urine.
2 – Why can ketones be dangerous?
Having ketones can indicate that your body needs more insulin. (Always monitor your blood sugar levels to know how much insulin you need.) If you have a build up of ketones, this can lead to Diabetic Ketoacidosis (DKA). Signs of DKA include moderate or large ketones, nausea, vomiting, abdominal pain, fruity or acetone (think nail polish remover) breath, rapid breathing, flushed skin, and lack of energy. If left untreated, it can lead to a serious and life-threatening diabetic coma or death. High levels of ketones are toxic to the body and if you’re experiencing these, you should seek out medical attention.
I just copied and pasted that info, as I am not very familiar with ketones and find it hard to remember what they are. All I know and remember from being in hospital was that they are bad. We are lucky, when Beau was diagnosed, he was well, so wasn’t in DKA. Thank goodness! Many children are diagnosed with this and are in a coma and spend time in ICU or HDU in hospital!
When we were in hospital Beau didn’t have very high ketones, they were 0.4 and 0.8 at another time.
I have told the diabetes team that when we had ketones I would freak out.
Anyway, so Wednesday morning Beau was very sick, KW tested him for ketones and they were 1.4! Scary, the highest his have ever been. I did freak out! He wasn’t hungry – but we had to give him insulin so that the ketones would drop. But if we give insulin, and no food, won’t he go low?!
He was only slightly high with his BGLs (Blood Glucose Levels) so I put that number into his pump and it calculated the correction of insulin to bring him down to his desired BGL of 4.5-5.5.
An hour later I tested the ketones again and they were down to 0.3 yay! It worked!
So anyways, to the Drs we go. He has Strep Throat too, and a DOUBLE ear infection. No wonder my poor babe is so unwell.
Remember how I DO NOT COPE with sick kids, I get so stressed out and worried and can’t focus on anything. Well, add diabetes to the mix and it’s a million times worse! Obviously! But not only do I have to worry about the sickness but also what his BGLs are doing, plus ketones, plus him not eating/eating and working out how much insulin to give him to keep him at a good level!
Well, let me tell you – I’m exhausted! Beau was really unwell Wednesday and Thursday (he had ketones again in the morning!! But the same thing fixed them quickly again – phew!) and had picked up a good amount on Friday.
Sometimes the hugeness of this whole thing is overwhelming and exhausting and I wonder how we will get through it. I think Beau has been incredible and his age has really helped, his courage and strength and amazingness is so overwhelming I could cry!!! And then I see some parents on the Facebook Type 1 Parent pages having some really tough times with older kids/teenagers and wow, that shit is scary!!!! So I know I am lucky at the moment. And he is fine, happy, and reasonably healthy.
But sometimes my heart thuds and I get scared that he has this so young and he could die, or he could lose his eyesight, or lose a limb, or develop kidney problems or any other of the side effects of this stupid, unforgiving, relentless disease.
I am not used to it yet.
I don’t have it sorted.
I am still learning.
I am still failing.
I am still winning (sometimes.)
Things have crept in to our lives to become ‘normal.’
But it’s not.
We parented healthy kids for 5.5 years before this shitty disease chose our baby.
I KNOW it could be SO MUCH worse.
I am grateful.
I am sad.
I am fucking exhausted.
I miss my space.
I miss how easy it was going out for a date night with my husband.
I miss our needle/pump/insulin/alcohol wipe/reservoir/libre/miaomiao/scanner free life.
Mostly though, I love.
I love my gorgeous baby Beau.
I love his cute big brother Cooper.
And I love their handsome Daddy, my partner in crime.
And I will do ANYTHING for my babies to be happy, healthy and safe.
This was last Tuesday just before Beau woke up sick on the Wednesday – they had PJ day at preschool with a shared breakfast! He was so excited about it for weeks and obviously loving life!!