I wrote this on the one year anniversary of Tiana getting sick....
1 Year Ago Today....
We almost lost our little girl.
Wow, this is going to be really hard, I'm crying already. I think it is needed though and will go towards some healing. I have a tendency to stick my head in the sand and pretend things didn't happen. Not healthy, so here goes....
28/2/2007 - It was around lunchtime and Tiana said she was feeling sick and didn't want any lunch. She went to bed and about 5 minutes later started SCREAMING. Really distressed and saying she had bad pain in her tummy, she was all curled up in a little ball and would not stretch out for me to feel her tummy.
I called the doc and told them I would be there in 15 minutes and thought it was her appendix. They agreed and I had to put Jake in the car asleep and scream over to my mother in laws to throw him into her arms. He started screaming as I walk away, poor little bugger didn't know what was going on. I had never left him before. He was 13 months old. I just really felt like Tiana needed me more than him at that moment :(. Little did I know it would be the first choice of many that I would have to make between them.
Tiana threw up in the car which seem to relieve the pain and she went to sleep. Got to the docs and they sent us to the Children's Hospital (Melbourne). I called Daniel and picked him up on my way through. Was told there that it wasn't her appendix because there was no 'guarding' and it was 'just gastro'. We were told to go home.
That night was one of the worst of my life (and I'm sure hers). She was in so much pain. It would build and build and then she would vomit and she would rest. She hadn't eaten since breaky the morning before but was throwing up copious amounts of dark green fluid. We ended up taking her in again first thing in the morning. Tiana passed out in the waiting room and we were rushed straight through. Many, many doctors examined her, she was moved to resus when it was discovered we couldn't wake her. This whole time we had Jake with us and at 13 months and just being able to walk it was a nightmare. Daniel and I didn't get a second with Tiana together, one of us was running after Jake the whole time.
I called my mum who I met in emergency. When she saw me she just broke down into sobs in front of everyone. It was the second time in my life I had seen her cry. The first was when my dad died. She couldn't even look at Tiana on the bed (who had had a drip put in and some oxygen tubes sitting on her nose) she didn't even wake when they put the drip in her.
Mum took my precious little boy home and we continued to sit with Tiana who regained consciousness. That first bit of excitement turned to despair when it was made clear just how much pain she was in. They put morphine into her drip and she calmed down.
No one could work out what the problem was. She was taken for an ultrasound. The room ended up having approximately 10 different people in it from various specialist fields. The ultrasound showed a VERY full tummy but she hadn't eaten for over 24 hours. There was also no sign of an inflamed appendix and she was a little young for appendicitis anyway (she was 3.5).
They decided to put a nasal gastric tube into her tummy to try to drain it. She woke up for the procedure and I had to help hold her down while they stuck the tube up her nose and down into her stomach. I have never heard her scream like that. Daniel and I were sobbing beside her.
They pulled out 3 litres o fwhat they called bilage. Which is very acidic bile. They thought she had a blocked bowel and did the tests for that but couldn't find anything. A urine bag was put on the end of the NG tube because the normal drainage bag would overflow too quick. By this stage we were no longer dealing with registrars and interns, the big gun surgeons were coming to see us. Dr. Maxwell reminded me very much of House, not a lot of bedside manor but very, very good at his job. I'll never forget him putting is hand on my shoulder and saying "well, the only good news I can give you is that she won't die today. Beyond that....who knows." By this stage she had lost consciousness again.
It was then thought that she had a really bad virus that could only be sat out.
I had to make the heart wrenching decision to leave her with Daniel and go home to my little boy who was at my mother in laws. I got there about midnight and it was clear that Jake had been distressed. Raelene (my mother in law) was sitting up on the recliner with him asleep on her shoulder. She hadn't been able to move for an hour. I took him to bed, put him on the boob and tried to get some sleep.
We went to the hospital early next morning and Tiana had had quite a bad night with them upping her morphine so she could sleep. Daniel had slept with her on her bed (ignoring the shitty little pullout thing they made up for him as well as the comments from some nurses!)
Her bag was drained regularly and she became much more lucid on morphine. She was still sleeping the majority of the days. She stayed this way for 4 days. She wasn't allowed any food or water and the really hard times were when she would quietly sob for water. I used to wait until she fell asleep then sit outside her room and sob quietly.
Daniel and I alternated nights leaving her, with me leaving the majority of the time because Jake would get too distressed when I was away. We hired a hotel room for a couple of nights that was across the road from the hospital which was perfect but expensive. Jake would spend the morning with us and then someone would come in and get him in the afternoon and either bring him back in the night or one of us would go home to him. It was exceptionally hard on him, he had no idea what had become of his life. None of us did. All of a sudden I was constantly having to choose between one child or the other. I don't think I will ever get over that, the guilt.
On the 5th day (after 3 different drips, each one a fucking nightmare to place) it was decided that her body was not coping through lack of nutrition and they would do 'exploratory surgery'. Scared the shit out of me but I was very hopeful that it was something thy could fix easily. Tiana went into surgery at 2.15pm Sunday. Only one of us could be with her as they put her under and I went. We had found a book about faeries in the waiting room and I took that with us. I got right up in her face as they were mucking around and was reading her the story, she was just into the story and didn't notice anyone else. The doc then had to pinch her throat as she went under. It was only a few seconds but there was a look of terror in her eyes as she looked at me. I felt like the worst mother in the world and thought I was going to vomit.
The surgery was over really quickly and they had found a fibrous band strangling the upper bowel. They said they had never seen one like this before, that sometimes they would be on newborns, generally around limbs and there had been some instances where they had had to amputate the limb because of damage. This didn't seem the case with Tiana, they had cut it off and thought the bowel looked sore and swollen but should recover full function. It seems she had had it from birth and all of her eating issues were related to it. As her bowel had grown, it had tightened, eventually kinking it.
We had another hard couple of days because they needed to monitor the amount of fluid coming out of her tummy so she was still nil by mouth. This was almost harder than before the op because she was feeling quite well and REALLY wanted something to drink. We had to scramble every time the food trolley came round to shut her curtains so she couldn't see the food. If it smelt too much we would stick her in her wheelchair and one of us would push her while the other tried to coordinate all the machines so they didn't rip the tubes out of her. I'll never forget the look on her face when she was finally allowed an icy pole.
She has never looked back. Her appetite is through the roof, this was something we had struggled with since introducing her to solids. Now she eats almost as much as me.
Jake didn't fair as well. At 13 months, he had not been exposed to any artificial preservatives or additives. When he was in everyone elses care he had very different foods to what he was used to (for the ease of whoever was looking after him and to keep him happy). I think this combined with a sudden drop in his breastfeeds meant he developed quite a severe reaction to anything even slightly artificial. He would get hives all over his face all the time. It took us ages to completely overhaul our diet so that there were no numbers whatsoever in anything we consumed. It was great in a way because we have pretty much stuck to it even though Jake stopped reacting.
I feel drained.....but strangely lighter. Now I'm off to pamper my beautiful children and to appreciate every moment with them.
It is still hard reading that - 4 years on. I have blocked a lot of it from memory, I rarely think about it anymore. I'm not sure how much of it Tiana remembers. She still has the scars on her tummy and proudly tells people where they came from. It was a huge experience for all of us and I do use it from time to time to reminder myself how good I have it.
To my wonderful Ange, hang in there mumma. We all love you and think of you and Deni often.
xxxooo
I had no idea about your experience with Tiana. Such a nightmare for you. Not anything any parent should have to experience. My heart goes out to you and to our Ange. xxx
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