This was the day that horrified me for years. This was the day that I thought could not happen to me or my family. This was the day that nearly broke me. The day was the realisation and the subsequent diagnosis of my daughter to the world of T1D.
In my head I had thought it could be possible that because I was the only one in my greater family to have T1D then I was going to be the one that was going to live and die with the disease. The genetic component would be lost on me and it would not be shared or spread. I think now what an idiot. With everything I know how could I be so naive how could I not prepare for the day just in case.
Well in truth maybe all that I had done in the last 23 years was just a lead up to this day. The understanding of the ups and downs, the understanding of management of this disease and the what to do and the what not to do's. Maybe, just maybe, this moment had been laid out and all of my experience was meant to be able to help my daughter be the best she possibly can be.
I am writing this post sitting in a reclining chair that will double as my bed tonight in an unknown n hospital next to my 2 year old daughter who sleeps not knowing or understanding that I will be looking over her tonight giving her 2 hourly BSL tests to ensure she is kept in a safe range, to ensure that I protect my beautiful girl no matter what.
2 days ago the day was like a lot in Queensland, nice weather and a nice outlook for the week to come. I didn't start the day well as my pump had disconnected itself in the middle of the night and I was as high as a kite and felt like shit however after correcting my sugars and recovering my wife,sister in-law and baby daughter headed to the shops to get dinner. My wife had mentioned,and I had noticed, that over the last couple of weeks our 2 year old looked a bit off but we put it down to a virus and believed it would pass and she would improve. While going through the shops my daughter persuaded us to give her some sweet treats just to make sure she didn't have a tantrum (that is how we will think of it).
The trip progressed but what was becoming extremely evident was that my daughter was desperately thirsty for water and was in need of a nappy change every 30 minutes to an hour. This started the thoughts that I never wanted to have or believe I was having. The amount of times in my own head I said to myself that "don't be stupid she has a virus and nothing is wrong" was ridiculous cause I knew deep down what was coming but I was not going to admit it to anyone. We went through 2 bottles of water in a matter of minutes and the same in nappies.
I looked up and my eyes met with my wife's and the look said a million things we were both thinking but one stood out "it couldn't be, not our little girl". I had my BSL meter with me and we bit the bullet and tried to test her blood just to reassure ourselves that this virus was just that however if you can imagine trying to prick a 2 year olds finger in the middle of the public while she was screaming it just wasn't going to happen so we abandoned the idea and finished what we needed to do.
We headed home and after arriving and changing my daughters nappy again I observed her stars up and pee again straight away but this wasn't anything close to normal. This filled an empty nappy and caused it to leak onto the ground. My next move was to grab my BSL tester and have my wife hold her ASAP.
With a screaming gaunt looking child I prepped the tester and found the finger. I reduced the depth of the device that would stab a hole to release the required blood. I positioned it on the edge of the pad of the middle finger and prayed that this wasn't going to be what I knew it was. I pressed the button to further screaming as I squeezed to get enough blood. I drew the blood onto the test strip and waited for what felt like an hour but was in fact 5 seconds for the results - HI. No I am not saying hello that was the reading. On the BSL meters there is a range that they go to and anything above that range is shown as HI which basically means that her BSL was higher than 26. I still didn't want to believe it so asked my wife to wash her hands as I reset for another test. The process was much the same. The screaming was louder and the struggling was fierce as the element of surprise was gone and gone forever. If only she knew that what was happening was going to be the start of the rest of her life. The result was the same - HI.
The disbelief continued even though every fibre in me knew what was happening. I told my wife we needed professional diagnosis as my tester could still be wrong. After a visit to the GP (with another test), a call to my long standing endocrinologist in Victoria we moved the older daughters to the next door neighbours and we rushed to the Royal Children's Hospital in Brisbane. The fear and guilt had set in on that trip and the tears started flowing from both myself and my wife. My wife cause her baby had gotten a life long disease that will see her need control, needles and the help. Me cause the only thing that would flow into my mind was that this was my fault. That if my wife had a child with someone else then this would not have happened. That my worst nightmare was in progress and this was the start of a never ending roller coaster with very high highs and very low lows.
We arrived at the emergency department and informed them of the systems and the test results and within 30 seconds we were moved in to the consultation area and the fun began.
To get the tests started the doctors had to take blood so a cannula was to be out into my daughters hand. If testing her finger wasn't taken well you can imagine the yelling and screaming of a large needle being put into a vein with another person holding the arm still and me gently holding her in place by lying over the top of her and trying to reassure her it was going to be ok. I still have the scratches healing from this event which would show you how rough this was.
The cannula was out in and her arm was put on a board and bandaged to ensure that she couldn't touch the line. The time had come to see her have her first injections. One in each leg at the same time. One to get the sugar levels down short term and another to keep them down over the coming hours. Knowing how to give myself needles I watch in horror as they aimed at each leg. The older of the 2 nurses held the leg still however the younger of the 2 allowed for movement. I heard the count down "1, 2, 3" and the needles struck. Screaming continued and as my daughter clenched the younger of the nurses lost grip if the leg and the syringe and to my horror the needle flayed around in the leg. The insulis were givens and the screaming started to subside. Now as it was now around 9pm and my daughter was already exhausted from her body fighting the lack of insulin but now she was completely wrecked. The insulin started to work and it was amazing to see my baby come back to us. The grumpiness started to subside and our beautiful baby started to look happier in herself.
It would be information we found out later but at the time of getting to the hospital my daughters BSL was 70. Keeping in mind that a normal BSL should be between 5 and 6 hers was extremely high and at a dangerous level. Another very interesting fact was that the highest I have ever been is 56. At that time I was vomiting and almost in a coma. The ability for a child's body to cope and adapt is truly inspiring.
I watched my daughter all that night not wanting to allow her to be out of my sight and not wanting to allow anything to happen to her. What I then promised to her was to help her understand this disease and the effects it will have on her. I promised that I would never leave her feeling that she is alone and that no matter what I would find a better way of living for her. My 23 years was going to be the basis of knowledge that was going to give her a path when old enough to understand. Yes she would make mistakes but I will always be there if she wanted me to pick her up.
The next day came and the time I had been waiting for was upon me. She was due her next 2 injections and it was time for me to administer them. The 30,000 odd needles had prepared me to not freak out however it is very different doing it on a toddler compared to a teenager or adult. It turns out that after the next injection that was done by my wife, number 1 for her, she has the more gentle touch.
The next 3 days in hospital were about education. This was some what sped up by the fact I already knew most of it but my wife needed to go through the basics and I was happy to help out where ever possible. It was decided very quickly by my wife and I that the best management method was going to be a pump. With our daughter being very picky when it comes to food we would not be able to ensure she would eat the required carbs if we were doing MDI. We knew that the pump was going to be interesting to see how our daughter would accept it but we also knew that she would be young enough to not know any different very soon.
We chose the same pump as the one that I use to help with the learning curve. The adoption from my daughter to having a device attached to her permanently was second to none. After the insertion and the initial shock screams it only took 2 to 3 minutes to go back to playing and being herself. Later that night when it was just her and I in the hospital she found the pump, and seeing as I had locked it and that I wanted her to know what it was, I let her look and press the buttons. At that time I pulled my pump out and let her compare them. Holding both she pressed them together and made a kissing noise. It was then that I knew she was going to be ok with this as she already knew it of it in her life. To myself I thought that this little girl would be my mini me.
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