Friday, September 28, 2012

A bit of a shock

It's the last thing on my mind each time I fall asleep..

...and the first thing I think of when I wake up.

My daughter has diabetes.

It's been nearly two weeks now. It's sad for me to look at these photos and think about how horrible she must have been feeling last weekend. I found them on the camera as I was going through it. They were taken the day before she ended up in hospital.
We had decided to take the kids for a short getaway to Hobart for two nights. It was also Job's birthday and we thought it would be a fun way to celebrate it. Although much of the trip was lots of fun, there were times when Lani wasn't herself. She has been off for a little while now, so we didn't recognise the seriousness of Lani's condition until the second day in Hobart. We were trying to settle the kids to sleep in our cabin on the Saturday night but Lani wouldn't sleep. She continued to drink and go to the toilet repeatedly. She also developed a pain in her stomach. The nagging feeling that had been plaguing me all weekend, finally started to sound like alarm bells in my head. I had a feeling that she may have diabetes and quickly googled it. I looked at the list of symptoms and saw that they were a match for what Lani had been experiencing. We pulled all the kids out of bed and headed to Emergency. When we arrived, poor Lani was feeling awful. She was in tears. I explained to the triage nurse that I suspected Lani had diabetes. The staff were very quick as they took her blood sugar level and then walked us straight through to the childrens section. The nurses took turns holding Teancum so that I could help look after Lani. She had a canula put into her arm, had bloods taken and then was hooked up to a drip to give her fluids. She had her first insulin injection an hour or so later when the diagnosis was confirmed and she was not very happy about it! I tried my best to console her cries all the while trying to grasp the reality that this was the first of many injections she would need to have for the rest of her life. The doctor explained that Lani had ketoacidosis and could have been much worse if we had have waited any longer. Its sad that many children present worse than Lani was.
She went upstairs into the Peadiatric ward at 1am. The nurses monitored her through the night, taking her Blood Sugar Levels each hour. I sat beside her bed in some sort of shock for all of that night. I asked the nurse what her readings were each time they were taken, even though I didn't fully understand what they meant at the time. I stayed awake the whole night, watching her, afraid to  fall asleep in case she needed me or in case I missed some vital piece of information from the medical staff. One time, around 4am, I started to drift off, just for a minute before Teancum stirred in my arms and woke me up. For a split second, I thought it had all been a nightmare....but it wasn't.
In the morning we met Alex, Lani's nurse and diabetes educator. He was great with Lani and introduced me to the world of diabetes. He explained only what we needed to know to get through the next 24 hours. I was shocked to see Job walk into the room soon after. I was so relieved to see him but then wondered where the kids were. He told me that Joe had driven down that morning and was looking after the kids at the caravan park. I was so grateful that Joe would drive all the way to Hobart to help us out. It was the nicest thing anyone could have done as I really needed Job to be there with Lani and me. Plus I was able to hand over our big chubby baby to him!
The doctors allowed for us to transfer Lani to Launceston Hospital that afternoon. We arrived at LGH at 5pm. They had a room all set up for us. I smiled as I saw the cot. Alex had organised it for us from Hobart but I knew Teancum wouldn't sleep in it as he doesn't even sleep in his one at home!
The first thing Lani wanted to do was take her canula out. The nurse ended up removing it the next morning much to Lanis relief.
We needed to be taught how to give Lani her insulin shots. She is much more relaxed here as the nurse/educator is teaching us. By the time Lani had her third needle (in Hobart) she stopped crying and being so scared of them. Job and I were both really proud of her for being able to overcome the fear of finger pricks and needles so quickly. 

I was like a sponge while we were in hospital, trying to absorb as much information as I could about a condition I knew nothing about. I was still shock I think and had moments where I felt emotional. I tried to hide it from Lani as I didn't want her to worry that anything was wrong. She has been so amazing these last two weeks. Being around her makes me feel stronger. The first time I cried was after practing with this insulin pen. I felt like I didn't know enough to look after my little girl and went and had a cry in the toilet. Then I told my husband off for knowing how to use it better than me!
Later on that morning we had a lovely visit from Lani's primary teacher at church, Jenny.

She bought Lani a special blue teddy. Lani loved it. She was getting a little collection of teddies.
She used some baby blankets to cover them up at night time and then told me off in the morning when she discovered that I needed to use one for Teancum.
Jenny stayed and looked after the baby for us while Sam and Alan came to visit. Sam's son Alan, is a friend of JJ's and also has diabetes. Sam is a nurse/educator who works at the hospital. Joe told her about Lani and she came in on her day off to have a chat with us.
 Lani found all the adult talk boring and was happy to play with Teancum.
 Job gave Lani an injection under Sams watchful eye
After Job went home, it was just Lani, the baby and me. It was nice to have time with her and see her being silly as we played card games (and she cheated) Her favourite nurse Jean gave her some stickers. She was in a crazy mood when I took these shots :)
The next day we had a visit from the Terrys :) I found a lovely suprise from them when I arrived home one night from hospital. They had been over and cleaned up our yard. The lawns were mowed, our little garden out the front had been worked over and the kids bikes and scooters were put away.
Here's Mariah with their cute baby Chester - and Sam with our big boomba. 

 Shortly after the Terrys arrived, our kids came in to see Lani. It was the first time they'd seen her since Hobart. Sisi was eager to find out what all the little toys and gadgets were in Lani's room. Here Lani is showing Sisi where her needles go.

We had a tough time trying to get Lani to have a play in the kids room. She finally did when her brothers and sister came. Not a big play, but at least it was something.....and she was happy. 
The Vinens came in for a visit too. They bought lani another cute teddy and a game to play.
It was nice to have the family all together again....for a little while, then I wanted Job to take all the noise back home :)
The next morning, Uncle Joe came to see Lani
He spoiled her with flowers and a beautiful gift. Lani will now be one of Joe's patients. He will teach her how to look after her feet as she grows. I think she is pretty lucky to have her Uncle as part of her team.
He brought more artwork and cute little gifts from the Rogers.
Later that afternoon, Lani spent time with Tash, who is the arts and crafts lady. Lani really enjoyed creating some special projects to bring home.

This is her later that night, doing her first finger prick on her own. Her BSLs need to be done every couple of hours at least through the day and then more if she is feeling unwell. That's a lot of pricking
I was getting ready to do a shift change with Job when Lisa and her boys turned up. It was lovely to see her. She told us that we were in the same room that Noah stayed in whenever he was in hospital.

                   She snapped this picture for me. I am giving Lani her insulin before her dinner.
I was feeling exhausted and went home to have a rest. The baby had been very unsettled  in hospital and between looking after him and Lani, I hadn't been able to sleep. I ended up going to the Rogers where Kym fed me, looked after my kiddies and sent me to sleep in hers and Joes bed. I ended up staying there the whole night.  Teancum and I had picked up a virus and he was up for a lot of the night. If I had have gone home as planned, I wouldn't have had much sleep. But at the Rogers, Kym and Joe looked after the two babies together while I got a couple of hours sleep. I don't think I will ever forget that. Kym and Joe have been there when I have needed them the most. They have been our Angels, looking after our other children for days while we looked after Lani.
My only regret is that I don't have a photo of them sleeping on their couch with the babies - that would have been a funny picture!
In the morning I headed back in to see Lani. I was excited as we were told that she should be able to come home that day. I felt a bit like I did when I brought each of the babies home after they were born - excited and scared. I got emotional again on the way in, worrying that I wouldn't be able to look after her when we got home. I felt sick in the stomach the whole morning. Again, I felt strengthened when I saw her. Being with her was what I needed. I think the nicest thing about that last day in hospital is that Lani got to spend it with her cousin and best friend Chelsea. In fact, Lani had her first 'hypo' the day she was with Chelsea because they played for ages together in the playroom. Exercise lowered her blood sugar. It was her first low, and we survived it. We have had many since then.
In the afternoon they did crafts together. They decided to draw a picture each for Lani's favourite male nurse - Jean.

                                    He is a clown nurse and always made Lani laugh.

                           It was nice to see her face light up whenever he came into the room
Sam came to see us again and set us up for everything we needed to know and do to go home. She also stole a cuddle from our cheeky bub.

Although I was nervous about bringing Lani home, once we arrived, it was so nice. I loved the feeling of all of us being under the one roof together again. I didn't sleep much that night either :) I didn't care though, I just loved having Lani back.
Life at home is very different now, but only as far as having to schedule mealtimes, insulin and blood sugar monitoring. The kids play together... the same as always.

                                                   Lani was happy to be home again too.
                                                                      We're all happy :)
    Especially Teancum who loves to chat to Lani. Teancum has been Lani's distraction and happy place for the last two weeks. She completey forgets herself when she's playing with him. It was also difficult for her to go to sleep in hospital as Teancum kept her up, wanting to talk!

She has just had her first week back at school. I have been there in the morning, recess, lunchtime and hometime to check her BSLs and give insulin at lunch. She is doing so well and her teacher is wonderful. She has been looked after and kept safe as she has experienced lows/hypos at school. The kids in her class are getting used to watching her check her levels and now call out "What number are you Lani?" They are learning about highs and lows too. Next week, I will try and leave her more, so she can be independent.
I am so amazed and proud of her. She is even giving herself her injections now.
I still lie awake at night and worry about her. When I do fall asleep I often have nightmares. It's still all new for us and I guess it will take a little while to get my head around it all. I think about what life will be like for her when she is older and I worry about potential complications in the future living with type 1 diabetes. I know that there are much worse illnesses, diseases and conditions that many children have to suffer. I know that my worrying doesn't do anyone any good....I also know that Lani is made of the right stuff. She is my hero, when I am with her, I hardly worry at all. Maybe I should just sleep in her bed :)


Nettie's Blog said...

you are a SUPER MUM Leona...Lani is a very special strong spirit sent to the most amazing famliy wher LOVE is in abundance....Brave Brave Lani who teaches us all how to be Brave...XXXX

Fiona said...

Leona, whilst I don't know you personally, I wanted to add a few words of encouragement.

I grew up in Australia, and am also Type 1 diabetic.

I am now an adult, and can safely say that being diabetic hasn't been too bad. In fact, secretly it has been a bit of a blessing. In this day and age of obesity and poor diet choices, I think being diabetic has empowered me with knowledge, and the ability to make good food choices. Our whole family (I have 2 daughters) are healthy, happy and active.

I can totally understand how overwhelming it all seems right now, but please believe me when I say it will get easier.

In fact eventually it will just be another part of Lani, like having brown hair or brown eyes.
She will cope and thrive, and be even more amazing, because she has met and dealt with this challenge.
You will meet incredible people along the way, and in turn you will help others.

A time will come when you don't spend every waking moment thinking about blood sugars and insulin injections and carbs.

A time will come when it all seems so normal, and it is just a way of life.

The treatments available have changed enormously and truly believe that in 10 years time Lani and I will no longer be injecting at all. Technology and knowledge and education are continually making life easier.

Lani will be fine, and so will you.
Be kind to yourself.

melandpeter said...

You made me cry Leona. You are such a loving and devoted mum. What also made me cry was the love and service shown to you by many people I know and love. So glad you were so blessed through such a trying time. I can't believe how well Lani is doing already with her injections. What a little legend!

The Kings said...

She's such a brave girl and you are such great parents. I'm glad you now know and hope that it gets easier as time goes on. Love the pics of Jean - he is awesome.

The Walshe Family said...

Wow Leona, what an experience/post. Could've kept reading if you wrote more, I love the way you write. Amazing little Lani sure is part of an amazing family & Tassie seems like such a family/friendly place :-)