Sarah Claire 28/11/2008- 26/07/2025

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Powered By Ringsurf It is with a heavy and broken heart that we share with our family and friends that on Saturday morning we suddenly lost our beautiful brave and courageous Daughter Sarah Claire Innes, She entered this world at just 735 grams and fought an epic battle right to the very last breath, the paramedics who raced to our home and took over CPR for me, will never be forgotten, they fought so incredibly hard and allowed Sarah to be surrounded by our love as she grew her Angel wings She was brave and happy and joyful, her favourite colour was pink and she had a love of Giraffes. Her Pokémon collections went everywhere Sarah went and she was so very very loved by so many. You are now home in Gods loving garden, resting and playing peacefully and free from pain 28/11/2008 - 26/07/2025. Forever aged 16 years, 7 months and 29 days

Its been 8 years.

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Powered By Ringsurf Its been 8 years. I am now a mother to 6 beautiful children, the youngest 9 months old. Sarah will be turning 10 this year, November the 28th. She is such a big girl now and living life the best she can. Of course there are the ups and downs, with her autism and her medical disorders, but she is thriving just like any little girl. To those who are reading this from the times when i updated this blog, thank you. I wouldn't know how to stand on my own two feet without all the support of those surrounding me, whether i know them personally or not. Sarah still has her episodes, where the hospital becomes her second home, but hopefully it will never again become her first. my daughter Jessica who discovered this blog says I have to write a book, of course me having no talent said she will guide me. (ps she's actually writing this write now XD) A small update on my other children. The oldest is 19, Jessica (the one writing this) is 16, the third 13, the fourth Sarah 10 and her little brother 6 and her little sister 9 months! Perhaps i will write another update, or see me again with a book *shrugs* who knows, but i will see you again :)

Facing fear for charity (Whittlesea Leader, 08 Feb 2011, Page 7)

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Facing fear for charity

Whittlesea Leader
08 Feb 2011

MILL Park mother of four Karina Caton is no fan of heights. But when it comes to her children, especially her two-year-old daughter Sarah, who was born without a pancreas, she is willing to drop from the sky at an altitude of 3000m. On March 3, Mrs...read more...

Tech Tags: Whittlesea Leader newspaper NEWS

Conquering Fears One At A Time

I sit here today looking back over the last 2 years. I know some people believe that dates dont mean anything but to me they mean alot. For me the symbolise fears and acheivements.

As I sit here right now and think were we were 2 years ago. I was sitting with Johm Mills being told my baby was very very sick. She was 3 days old already and I hadnt even held her, she was being kept alive by a breathing machine and her life held on by a thread.

I was able to place Michael's wedding ring over her tiny hands, her very first bangle. Stop for a moment and take a look at your husbands wedding band and then imagine placing it over the wrist of your newborn baby.

I look back to this day and part of me wants to go back, because while yes we had a premature baby and a very sick premature baby, we had a premature baby with all her organs, she would grow and she would fight and we would soon bring her home and life would go on.

But part of me wouldnt go back. I love Sarah with all my heart and have accepted her for who she is, a very special little girl who has touched the hearts of many.

I feel blessed to be the Mum of this little girl who has had to learn to live in our world and I have had to learn to live in her world, and its been a challange.

We had an issue with her Insulin pump yesterday in where it completly malfuctioned, Id been checking her blood sugars all day and they were fine, until the afternoon where they shot up and then I checked her ketones and they were 6.7, which is an incredibly dangerous level. She had been awefully grumpy and no wonder why, but I had no idea her pump had malfuctioned.

I froze. Id never seen Ketones so high. So I called the hospital and I gave her an injection of insulin. I sit here waiting for a replacement pump which should arrive tomorrow, and in the meantime we are giving insulin by injection every 4 hours.

One of the worst things about Sarah is the unknown and nightime is incredibly hard. We do not know why Sarah has seizures but they often come at night.

This morning when Sarah woke she was acting very funny. I immediate thoughts went to low BGL and as I checked that it was HI, so it wasnt a hypo, but just as quick as the episode happened it was over and it registers that it was a seizure.

None of the other children with Pancreatic Agenesis suffer from seizures so we are unsure why Sarah does, and we are very much struggling with our decision to start her on Anti-Seizure medication. We know by starting it we are protecting her brain, but in exchange for that we are sacrificing her Liver.

Last weekend saw Sarah reach her 2nd Bday, it was a quiet day with lots of reflection on how far she has come and this weekend her friends from NICU are joining her for a little party which we are very much looking forward to!

Alot to get off my Chest

Yet again Ive been slack in updating.

Its been a pretty rough month on the health point for Sarah the last month, its like I dont even really know where to start.

This post might be abit back and forth but I shall try.

Firstly we feel incredibly lucky to have Sarah with us and we go through periods where its like she is like any other child and sometimes its like she doesnt have any health issues. All the suns line up, everything aligns and she is very easy to manage. She absorbs everything, her blood sugars have great control, she has no lingering infections and she is the most happiest, cheerful little girl that is developing her own personality. And I smile and I laugh and we do normal things and its like she isnt sick at all. I relish these moments because I know its not going to last long.

Then its like someone flicks the light switch on and turns on a fan and proverbial shit sprays all over her and she is sick and she never does anything in halves, so 9 times out of 10 she is really really sick.

For almost 2 years this has been our life. Living in and out of hospitals, Drs, appointment, early intervention and more recently making phone call after phone call trying to get some help.

I understand that there is only so much funding for respite services and disability services, I truly get it and there is someone worse off out there. I try to do it on my own and mostly I have.

But pretty much for the last 2 years, Ive not slept more than 3 hours at a time. Im tired and run down and I have health issues of my own.

I have an alarm on my phone. Every 3 hours it goes off. It reads check BSL. Feed. Solids. Its reminding me every 3 hours Sarah requires some food of some description.

We have tried many avenues for respite. Always the same response. We can provide respite, however die to her complex care we cannot enter anything into her pump. Which means basically we cannot leave a respite carer alone with Sarah.

We looked into overnight care. But even still it does not give us sleep. The respite carer would be able to check her blood sugar, but would then have to wake me to give her insulin. If I have to be woken to give her insulin, I may aswell just wake up to do the blood sugar itself.

Our very last option was a service called Very Special Kids, they have a house in Malvern where you can get occassional respite, its staffed with trained nurses who provide very specialised and complex care. Sarah was accepted onto the program in July 2009 - yes a whole 14 months ago. At the time I recieved a letter saying that Sarah had been accepted but was on a waiting list. So last week, feeling utterly exhausted I contacted them to be told that they had consulted 2 Drs and the decision was made that Sarah couldnt be accepted onto the program for 2 reasons.

1. Her condition was not life threatening enough
2. Her condition is to complex for the service

So this just infuriated me. The very last respite option is not even an option now. What about Sarah?

I am one person and I cannot function like this forever. Why cant I say "She is too complex", WTF will happen if my health issues escalate and I physically cant care for her.

So moving on from my vernal vomit about the total lack of respite services *sigh*

This time last year Sarah had just undergone Open Heart Surgery, and Im pretty sure all of you bar maybe one reading this will know how this unfolded (and that is only because this person had a child on the cardiac ward that night)

Sarah came out of her surgery better than expected and it was decided to fast track her to the ward, she was taken off the ventilator and after 2 hours in recovery she was deemed stable and moved to the ward. I remember following her from recovery to the ward that night. We arrived on 7West late it had to be almost 10pm I think. There were lots of Drs/Nurses around and they suggested I go downstairs for some fresh air while they settled her in.

I was sitting down talking to Michael on the phone, its 10pm so you can hear every conversation, every person talking by. Right then over the intercom you hear

"MET 7West bed X"

You hear these all day and it takes a moment for me to register that the MET call was for Sarah.

MET is for Medical Emergency Team.

I race back to the lifts and they take forever. I make my way down the corridor to Sarah's room, petrified of what Im going to walk into. There I met a room full of Drs and a lovely Mum whom I am now good friends with.

Sarah had stopped breathing. They had managed to bring her back but they had no idea why she went from stable to not breathing.

From that point on she made an incredible recovery from the surgery and we were home in 4 days. I was relieved. It was 1 week to her 1st bday.

However 3 days before her bday she feel very ill. Id paged her Paed and he told me to bring her in. So as I stood there yet again in front of the Traige nurse, Sarah suddenly went limp, her eyes rolling into the back of her head.

Traige quickly grabbed her from my arms and she was raced to Resus, she was having a seizure and not breathing.

We were able to stop the seizure and stayed for observation and our lovely paed ensured that Sarah would be home for her eagerly awaited bday.

We made the decision at the time not to put her on Anti-Seizure meds, but rather threat the seizures as they occured as the seizure meds effect Liver function and as she is already in Liver Failure we didnt want to add the stress of the meds on her liver.

But today we admitted defeat. Sarah had 12 seizures over the weekend and we can no longer treat them as they happen.

So now we are faced with the decision. Start the meds and protect her brain, but its highly likely they will place her Liver into free fall, or dont start the meds but she could be suffering irreversable brain damage.

I just keep saying to myself - We can replace her Liver but not her brain but still I feel torn.

Im tired, exhausted and sick of trying to make the right decision, but somehow I will and Ill live to fight another day

An Update and Thankyou

Its been a while since I added an entry here.

The last month has seen Sarah face some challenges with her health, but she battles on, her smile and laughter has returned and for that I am very grateful.

This week marks an Anniversary of sorts, its not quite her 2nd bday yet, but this time 2 years ago, things were not looking good and there were alot of people worried about this baby that I was carrying. She wasnt growing, I had a hindwater leak, fluid levels were dropping and I was in premature labour. I remember this week clearly. There I sat in a delivery room, being pumped full of drugs to stop the contractions. The Nursery was on standby. The Aneathesist had come to see me at 10pm to go over what would happen if this baby was born tonight. Her estimated weight was 525 grams.


We made it through that night, I spent another 3 days in hospital and come home on Bedrest. I was worried, really worried.

Then she arrived. At the time all I could see was a beautiful little girl, I didnt see the breathing tubes, the translucent white skin, the multiple lines, the machines keeping her alive. Even when they told me her stomach was severly distended I couldnt see that either. I just saw my baby, a baby born before her time.

I see it better now. She was tiny. She was born without a heartbeat. She wasnt breathing. She was so anaemic she required a blood transfusion within an hour of her birth. She was critically ill.

It feels like so long ago that we had "that" meeting. The meeting when we were told she had Pancreatic Agenesis. I remeber sitting there saying. "So she will be a diabetic" I had no idea the pancreas was such an important organ.

I also dont think I realised how fragile her health would be that first year at home. Sarah caught everything.

When her Dr's told me that a simple cough or cold would present a major danger to her, I thought "pfft" its just a cold. But my god how wrong was I. A simple cold would send her blood sugars haywire, she would be in respitory distress within hours and in the emergency department Resus bay. At one stage the Drs were tossing up putting her on CPAP in ICU.

We made it through 19 seperate admissions that first year. Each time I held my breath hoping her body wouldnt give up. Sarah is tough, I know she is tough, she defyed the odds through her early start, but in the back of my mind there is always that niggling thought, she can have all the fighting spirit in the world, but what if her organs have just had enough, what if this is that one infection she cant fight.

Recently the Type 1 community lost one of its own. Succumb to the very disease that people see as ok as long as you take your insulin.

Many people see Insulin as a cure. It keeps out children alive, but its only a bandaid. It covers the wound but does not heal it.

Insulin is a very dangerous drug, to little and your in acidosis, to much and you can be in a coma. Its a fine balance. Its also one 2 years later that we for the majority of the time have not found.

Its not our fault, its not the Drs fault, we are doing everything by the book, its just that Sarah cant read yet, so she isnt following the book! She is travelling her own path.

For Sarah though, she is following the path of those "born without a pancreas". Its noted alot in literature that there BGL's are brittle and hard to control. There growth is delayed, they have issues with Multiple organs.

What is a comfort these days though is that through the www I have been able to locate other families. I am in close contact with 3 other families and its good to share similarities and challanges, share ideas and watch these little miracles grow.

I'll finish with this quote

"having a baby is difficult, having a child with diabetes is more difficult, but having a baby with a rare type of diabetes that few understand is extremely difficult and isolating"

I'd like to thank everyone for the support they have showed us, for educating there own circle of friends on Sarah's condition, it means alot that you take time out of your day to think of Sarah and her daily challanges.

Im No Artificial Pancreas

Its been one of those weeks, you know when you just cant wait for a new week to start because you feel like grabbing Diabetes around the neck and strangling it to death.

It's so hard to find a nice balance with Sarah and when we do find it, something changes and what has just taken us 6 weeks to find a good balance is no longer working. Its hard to explain the frustration that this brings.

I feel like the weight of the world is on my shoulder at times and one tiny mistake and weeks of hard work goes out the window, and that people are standing by waiting for me to make a mistake and you know what Im human and sometimes humans make mistakes.

Last week I got up and went through the morning routine. Change and dress Sarah. Go and make school lunches, while making breakfast for the older kids and getting them out the door to school on time. Sarah is happy to play for an hour while I get the older kids all sorted which is great.

9am comes and I get Sarah's breakfast. Making sure that I have her cereal weighed to the nearest gram, then out comes the calculator to calculate the carbs.

I bolus for 26 grams. Thats for cereal and the milk used in the cereal and an additionals 80mls of milk in her sippy cup. I take her BSL and its 8.6. Perfect I say.

10am comes around and Sarah has finished her morning Physio session and is getting tired. Its time for morning tea and her sleep.

Out comes the BSL meter. BSL is 26.8, her ketones 1.7. Sarah is incredibly grumpy by now and very out of sorts for her. I wash her fingers and test again, but she is even higher.

I check her pump history and sure enough no Bolus was delivered at breakfast. I was sure I did it. I give her morning tea and 1.5 units to correct the High blood sugar.

I sit there and feel the absolute pangs of guilt. Its my fault that Sarah is feeling so crappy, that her BSL is so high that she doesnt have enough insulin circulating in her blood so her body is developing ketones.

Two hours pass by and I go and check on Sarah.

She is still sound asleep. I check her Blood Sugar and it is LO, so low the meter cannot register a reading. I try and wake her up but she is floppy and having what are called a Diabetic Seizure. There is no fitting, there blood sugar is just so low they are unable to respond to anything.

So out comes an injection of glucagon. This injects sugar immediatly and she comes too and proceeds to vomit, but she is awake and responsive again.

The guilt overcomes you again, because as much as you want to be, you are just not as good as a pancreas is.

You push through the day and another day dawns, but the guilt is forever there.

A Message From Sarah

Hi Everyone.

Mum and I are participating in the Walk to Cure Diabetes, an event that raises money to fund vital research into finding a cure for type 1 diabetes.

As you know, our family has been directly affected by this chronic illness and it is still a constant struggle. Type 1 diabetes is an autoimmune disease that is not caused by diet or lifestyle or through any fault of the sufferer. It can strike at any age but often occurs in childhood. Every day, five more Australians are diagnosed with the disease.

Type 1 diabetes affects every aspect of a person’s life and has a huge impact on families such as mine. A diagnosis of type 1 diabetes means constant finger prick tests and insulin injections, up to six times a day. This happens seven days a week, 365 days of the year. There are no sleep-ins, no holidays and no
time off. Just today Mum had to check my blood sugars 12 times! Children don’t grow out of type 1 diabetes and the threat of dangerous blood sugar highs and lows is
always present.

Perhaps the hardest aspect of the disease for us to deal with is the potential of long-term health complications. Even with the best care and management, people with type 1 diabetes often face complications such as blindness, heart disease, stroke and kidney damage.

That is why I am asking for your support. The Juvenile Diabetes Research Foundation’s Walk to Cure Diabetes raises money to fund the best and most
promising Australian research to find a cure for type 1 diabetes and help
families like mine.

Please give as much as you can – all donations, regardless of amount will bring us closer to a cure. To visit my personal fundraising web page click on the link below. When you donate a receipt will be automatically generated.

Thanks for listening to me, back to bed now, Mum is just about to come and take my BSL again!

http://walk.jdrf.org.au/teamParticipant.asp?participantID=571

The Artificial Pancreas

Im very excited.

I had a meeting with Sarah's Endocronologist. Her nice, friendly supportive endo, (not her origional Dr McMoron )

We planned this meeting a month ago after I was contacted by a Dr in the US claiming to have made a breakthrough in Pancreatic Agenesis research.

Firstly we discussed the events of last week and the condition in that Sarah was in. She agreed that it was unacceptable and can understand my feelings in why I feel they failed in there Duty of Care to Sarah and what we can do to ensure it wont happen again in the future.

We then moved on to this US research group. They have come across a new gene mutation called RFX6 Gene.

They found this gene mutation in 6 of 7 patients with Neonatal Diabetes. The patients all had a pancreas but the pancreas was either Annular or Hypoplastic which means that only a tiny portion was developed in fetal life.

All patients had Neonatal Diabetes but more interestingly they all had Malroation of the bowels, Severe IUGR at birth and Bilary Atreasia's.

Sarah was IUGR, Hypoglycemia within hours, had Malrotation of the bowel and had a micro colon which is a Bilary Atreasia.

The research this far and this part of the research is only at the mice stage, but that Islets Call Trasplants have transitioned the mice of insulin and this is a major breakthrough. It appears the RFX6 gene mutation causes all patients to be born without the Islets of Langerhams which are the insulin producing cells of the pancreas. Of course Sarah being completly Pancreatic Agenic means that she has no insulin producing cells, but this research indictes that an Islet cell transplant would be succesful.

We are quite a few years away from ICT therapy being approved for humans, but it is a major breakthrough for the few kids with this conidtion.

Something else that is quite exciting for us is the first stage of the Artificial Pancreas.

The first stage is now available in Australia. However upgrading Sarah's current Insulin pump to the new one is complicated. As hers is still under warranty under "Governemt Guidelines" we are unable to for another 2.5 years.

Well we found out in the last few days that there is a loophole in the system. If a newer technology becomes available that is better able to manage the condition then your health fund at there discretion may pay the benefit.

The new System is in 2 parts. 1 is the insulin pump itself. The second is an additional cannula that reads the blood sugar every 5 mins and uses blue tooth technology to send the reading to the insulin pump. the insulin pump then alerts the user ie me to rapid changes in blood glucose. So if Sarah's blood sugar was rapidly falling it would sound an alarm to alert us. If we were unable to take action ie we are asleep and the blood sugar falls below 2 it Automatically suspends insulin delivery for 2 hours.

So a few calls later and we find out the criteria for applying for "special consideration"

The claimant needs to have

* Used glucagon in the last 3 months
* Frequent Hypoglycemia
* Had an episode of Unresponsivness/Diabetic Coma
* Hypo Unawareness

Sarah meets all of these which is bad she does but good for this purpose

Now there is the pump side of it that health funds cover, but the optional CGMS system is not covered and comes at a cost of about $1500 with the cannulas priced at $75.00 each and they last for only 6 days. So the ongoing monthly cost is about $300.00

So we placed a call to our health fund who advised that if it was explained by the endo on how the integrated CGMS would benifit sarah and assist us to manage her condition that they could use "special consideration" to also pay for the CGMS.

So its really been good news. Our Endo is writing us a letter of support but things are looking positive for it to be approved

Admission # 25

So we have just come home from Admission # 25. An experience I never wish to happen again

Below is an email I have sent to the hospital administration

I have had a few days to reflect on an incident involving the medical care of my daughter.

She has a long and complex medical history at the hospital coming to the Neonatal Unit when she was 36 hours old. She has a precarious condition and was diagnosed with Pancreatic Agenesis (She was born without a Pancreas)

Last Thursday (19/08/2010) I bought her to the emergency department with a suspected Bowel Obstruction. Her care in emergency was not the concern, however late in the day it was decided that in order to wash her bowel out she would require an IV. 6 attempts were made at accessing her with no success. Her Gastro Consultant then made the decision that she would need to go to theatre for a washout and for a Central Line to be put in.

As she has Pancreatic Agenesis she is Obviously flagged as a Type 1 Diabetic and this would be the 5th time she would be going to theatre. We were admitted to the 5th Floor Medical unit. Shortly after arriving, the theatre nurse came to collect her.

Her BSL was checked prior to leaving the ward and her BSL meter handed to staff. I walked down to pre-op hold where I again checked her BSL and it was 9.6. Her Insulin Pump had been reduced to 50% of its normal rate as she was ion a fasting state and has a history of her BSL’s dropping under a GA.

She was returned to the ward 2 hours later. The recovery nurse said that she had woken up and had been kicking her legs around and all obs stable. She then left the ward

I touched Sarah’s hand for no reaction. I asked the nurse what her BSL was. There was nothing recordered on her theatre Observation chart.

I immediately took her BSL to find it was 1.4. Her nurse was checking her conscience state and she was unresponsive to Touch, Voice and painful stimulus.

There were no fluids running so the nursing staff administered 35mls of Dextrose into her central line and Sarah started coming out of the hypo

It was confirmed that no Monitoring of her Blood Glucose Levels had occurred in the time that Sarah was in the care of the Theatre Team.

As a parent of a child with a very complex and precarious medical condition, we place 100% faith in the medical staff. I can be in control of a lot, but in theatre I place my full trust in the medical staff

To witness what I witnessed was horrific, there is no other way to explain it. To watch your child completely lifeless with the only good thing being is she is still breathing is something that should never have occurred.

Sarah has had this condition since birth. Low bloods sugars are apart of daily life for us. In the 18 months since she first came home she has never fallen into an unresponsive state.

I guess I cannot understand why her blood sugar was not checked at any point while she was in there care. She is on an insulin pump which makes it fairly obvious that she is a Diabetic and I had a conversation with at least 3 theatre staff about the importance of monitoring her.

Being that Sarah has no Peripheral IV access left, we are left with the prospect of having to go to theatre for a central line should she become ill again. We have been very lucky this year and have been able to isolate her and she has avoided the nasty winter bugs, but it appears that she has picked up a bug on the ward this admission, so its likely that we may be facing the prospect within the week of having to bring her back in, if the infection gets into her chest as it has in the past, the only thing that has healed her has been IV Anti’s which puts us in the position of again placing her in the care of theatre staff and praying that they don’t repeat this mistake.

The consequences for Sarah could be devastating and its myself and my husband that are left to repair the damage. I do not like to or want to come across as a difficult parent, but Sarah cannot yet advocate for herself so it’s my job to do it, but I feel very strongly about this incident

Sarah sees multiple teams at the RCH (Neonatology, General Medicine, Endocrine,Gastro,Cardiac) and I have been so frightened by this that I am literally petrified of her needing admission to RCH again. I believe an incident report has been submitted and I am writing to inform you of my feelings as I would hate for this to be swept under the carpet and for it to occur again to either Sarah or another patient with devastating consequences.

Welcome to NICU

I was reminded today that we are approaching our 2 year Diabetes "Anniversary" and its allowed me to do some reflections.

As I walked around cleaning the house today, the music on, Sarah plodding around the house getting into everything as I was putting it away. I stopped and just stared. My mind going back to those early day, the tears, the excitment, the nerves, the anticipation, the uncertain times, the sadness and the happy days.

In alot of ways when Sarah was born I was so overwhelmed by what was happening. I didnt even have time to absorb that fact that my Ob had just walked in the room and said "I need to get this baby out she is very sick", and that was it, people rushing everywhere.

Then I wake and am told I have a daughter, a very small daughter but she is alive and in NICU. I dont remember seeing her that night, I was wheeled through NICU on the way to the ward, but I was so drugged out all I could see was bubble wrap.

I do remember a few hours later when I was slightly more awake talking to a Dr from NICU. She explained that Sarah was doing as well as could be expected and she was on CPAP but coping extremely well given her tiny size. I also remember calling quite a few times overnight to check on her. I had quite a few friends and family that were calling me that night, probably trying to keep me pre-occupied and my mind off things and I will forever be grateful to those people.

The next day was Saturday. Michael bought the kids in. In the morning I begged the midwife to stop the Morphine drip and remove the Cathetor, I didnt care how much pain I was in I desperatly wanted to see my baby. What if things were worse than I was being told? I had to see her for myself. I didnt want anymore polariods, I wanted my baby. I HAD to lay my own eyes on her.

I did go and see her on the Saturday. I remember sitting there next to her, to scared to touch her but just staring. I had no idea how something so small could survive what she had, but what was breaking my heart was how was she going to keep fighting, she was so tiny. The photos really didnt do justice but I am not kidding when I say her fingers and toes where no bigger than grains of rice. Her skin was almost transparant. Her eyes still fused closed.

That day she was taken off CPAP and onto Low-Flow Nasal Prong oxygen, what I was to later learn is this is a massive step for a child her size and in her condition and there she was showing them all.

Again the Drs spoke to me. It was Dan Cazalaz, such a sweet caring Dr. They had concerns about her gut. Her abdo has become distended which is not uncommon on premature babies but its generally caused from feeding, so the treatment is to drop the volume of feeds down, only problem here was that they hadnt yet fed her. So they spoke about Anti-biotics and this was the first I heard mention of her having high blood sugars and requiring an insulin infusion.

The nexy day Sunday is where we see it all go wrong. Her abdo continued to swell and she went into respitory distress and they needed to ventilate her. I think that memory will stay with me forever. I had a friend come visit me in the hospital and I walked in on the Drs in the process of ventilating her. Drs everywhere, they were doing more xrays and this was the first time I cried since she was born. Only a few hours later Sarah would be on the way to the RCH for what was going to be a long road to home.

Arriving at the Childrens hospital was a surreal experience. Michael had gone with Sarah and the NETS team to the Childrens and I was left back at the Mercy really with no idea how Sarah was. She was assessed by the Neonatiologist John Mills upon arrival and he briefly spoke with Michael. Things didnt look to good and they would do everything they could. I discharged myself from the Mercy and arrived at the childrens at about 2 in the morning where I would stay for the next 7 days.

I met Dr Mills the following morning. We sat down with John and another Dr who would be her general surgeon. They told us that Sarah looked to have a condition called NEC which is a condition in which the wall of the bowel becomes infected and "dies" the treatment is surgery to remove the dead colon, it has a high mortality rate and not every baby with NEC survives.

I remember walking into the hospital that night thinking "hey once they fix her bowel, she just needs to grow and will be home before we know it", Id do anything to go back to that now.

Day 9 became the day she was operated on, it was the longest 5 hours of my life. To know that they are operating not only on your 9 day old baby, but a baby that should still be growing inside you and is so tiny you cant even understand how they are going to manage to find her "colon" is one of the most terrifying experiences. "Was she strong enough", would she make it through?

Sarah was actually operated on at the bedside in NICU, and I think thats when I relised for the first time that we had a very sick baby, to know that she was so unstable that she couldnt be moved to theatre for the operation and that theatre would be coming to her.

I had met 2 very lovely mums in NICU, 2 mums that to this day we are pretty much in daily contact. We all had a very long road home and all our children whilst all have different complication we very much travel this continued road together. We cry together, we laugh together and we even scream together. All 3 of our children have had multiple surgeries and to know that when we are travelling a hard road, either one of us can pick up the phone and know that they understand and they get it is comforting.

There were several times in the first few uncertain weeks were I am positive the Drs didnt know if she would be there tomorrow, the problem was they simply didnt know what was wrong with her and that was a massive hurdle. When that surgery was in progress I remember seeing the Neonatiologist being called into her room and looking back it was obvious why now. The problem with treating Sarah was they couldnt believe that they were seeing let alone determine how they were going to save her.

It was late December when I met with Dr Mills again and he explained that there early suspicion was that Sarah had Cystic Fibrosis but during the surgery they were unable to locate her Pancreas and Gallbladder. He continued on by saying "Ive been a Dr for over 30 years and not only have I never met a child born without a Pancreas Ive never ever heard of it happening. After her surgery he contacted his father in the UK who is also a retired Paediatrician who had never come accross it either. He thought the most probable diagnosis was going to be Neonatal Diabetes and he explained how hard it is to stabilise diabetes in babies, let alone babies that were born at half there expected size and 9 weeks early.

So we went into Christmas with the faith that she did have a Pancreas, it was just that it was underdeveloped. Over Christmas however Sarah started going downhill at a rapid rate and she had also developed Nec for real this time. Thankfully they were able to treat it medically and she didnt require the removal of more of her Colon.

We met with John again in the early January and this is when we got her offical Diagnosis of "Pancreatic Agenesis" . He explained that along with No Pancreas and No Gall Bladder she also had a heart defect and a Abnormality of her Bile Ducts and her tests were showing that her Liver was failing. God Bless this man because he was so upfront with us. He told us that day that he didnt think she would survive and it would be a miracle if she ever came home.

The next few months really were at a standstill for me. I was grieving alot, grieving for what should have been, what was to come, what wasnt to come, but I had to remain strong for Sarah. I was really optimistic even when her Drs wernt. I felt if I lost that optimism then I would crumble.

I think too I was grieving for others. The thing with the RCH NICU is it is so very different to the other lvl 4 NICU's. It became apparent very early that there was only 3 reasons your baby was tranferred here.

1. Your child needed Surgery

2. They didnt know what was wrong and things wernt looking good

3. Palliative Care

In Sarah's 14 weeks there we met and said goodbye to 12 little angels. One that deeply touched my heart was little Cleo, she was born the day before Sarah at full term and Sadly she passed away 4 weeks after we achieved our Miracle by bringing Sarah home. Cleo would never leave the 4 walls of NNU, she would never have sunshine on her face and that broke my heart as only weeks earlier Cleo was getting ready to be discharged home.

So I sat there today watching Sarah pulls toys out right after I packed them away, I picked her up and I just sat there looking into her eyes, and giving her a massive cuddle.

I havnt slept more than 5 hours in one stretch since she was born. Some night we dont sleep at all. Her diabetes is very hard to manage, as hard as we and her medical team try. We do what we can for her.

But by all accounts for me to be sitting here reflecting on this, talking about how Sarah was into lots of Mischief today is an absolute Miracle in itself.  At the start of this journey I didnt know how she was going to be able to breath on her own, I think I can honestly say I dont think that paed John Mills did either, and without him I dont think I would have been writing this. He searched high and low, he worked around the clock, when he got over the shock of what they had discovered he knew he was racing the clock to save this baby and he not only saved her, she in her own way is thriving.

Everynight I say a prayer for all of Sarah's little friends and there parents and I send some angel dust up to her friends who wernt able to stay but know that they are now at peace and will likely live in Sarah's heart forever.

I recently put this slideshow of Sarah together, if you have time pop over and have a look.

http://www.onetruemedia.com/shared?p=b797a26d0fd238564a921d&skin_id=1901&utm_source=otm&utm_medium=text_url

Sarah's 18 Month Growth and Development Assessment

Ive just received Sarah Growth and Assessment report in the mail and Im pleased as punch! It reads as Follows. 

I reveiwed Sarah in my medical outpatient clinic today with her Mother Karina. Sarah is now aged 18 months and has had a relatively good period in recent times. She has had a couple of months without incident, but over the last month there have been a few annoying problems such as an episode of of gastroentroenteritis, followed by an episode of tonsilittis that seemed to roll on to some upper respitory infection with cervical lymphadenitis. This all settled down then came an episode of Apnea with associated peri oral mottling while she was asleep. She had episodes like this about 12 months which I believe were very similiar and probably the same mechanism.

Sarah has had some seizures in the past and has had a videa EEG which was normal. Karina does have Buccal Midazolam at home to be administered should she have a prolonged seizure lasting more than 5 minitues.

Developmentally Sarah is doing Brilliantly. Her communication system is evolving well, with 5-10 single words, a lot of babble and good verbal responsiveness to verbal commands emerging. She commando crawls for effectively now, and sits stably. She pulls to stand and is beginning to cruise the furniture. She eats everything and is sleeping quite well.

The Endocronologists of course, are monitoring her diabetes and her recent HbA1c in July was 9.6, and I understand that her basal rate has been increased to try and bring this down a little. She is having some hypo's but these havnt been terribly troublesome.

Sarah is about to commence childcare two days a week which I think will be excellent for her Social development. Karina is trying to access an aide and I have sent a letter of support.

Sarah looks excellent today. She was happy and interacting delightfully, and played at a developmentally appropriate level on the floor. Her weight was 7.5kgs which is an increase of 220 grams over the past week.

Sarah has developed acholic stools (known to have schleriosing cholangitis). She is anicteric and remains well. I have asked for urgent review by gastroenterologists.

t is wonderful to see how well Sarah is doing. I am on sabatical for a few months and I look forward to seeing her again when I return.

 EB Bloggers
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The Dilemma of a Visit to the Emergency Room

One of the hardest things of having a child with a Rare condition is what happens in an Emergency. In an emergency you dont have time to call your "medical" team and you face the prospect of arriving at the emergency department with your child needing urgent medical care and explaining that your child has a rare condition.

You quite often met with black stares and even with eyes rolling and you wish for just one moment that it was a dream. But its no dream and you are quickly snapped back out of it. You stick to basics to get the immediate problem sorted.

Take a moment and think back to times when you have had to take your child to an ER room, a GP, a dentist. Your Given forms to complete, there is always a section on previous medical condition. Diabetes is always listed there but we always have to tick "other" and list Neonatal Diabetes/Pancreatic Agenesis.

I always try and give a very brief explanation. I say "Sarah has Pancreatic Agenesis, so she has Neonatal Diabetes and complete Pancreatic Insufficiency, she is on an Insulin pump and Creon supplements" Then the Drs, Nurses, students come flying in with questions.

Its a very frustrating position to be put in, you know your childs condition inside back to front, but your in a critical situation most of the time and your in the ER because you can no longer deal with things at home. But yet you stand there in front of Drs and Nurses that not only have never met your child before but they have never heard of her condition. Yet you stand there knowing your childs life is in there hands. You are inredibly powerless in a way.

The point I am trying to make here I guess is about education. Every emergency visit for us is met with stares, we get glances from every direction. We get concerning glances from Drs, from nurses, from cleaners and yes even from other parents in the waiting room.

My child may look no more ill from yours, or she may be screaming at the top of her lungs and no I cant "Shut her up". We may bypass traige and be put to the front of the queue and taken through immediatly but that is because our childs condition can become critical in seconds. Its also because a simple cough or cold can be life threatening for Sarah.

You may be a person that works within the healthcare industry, ot studying in the field. I know sometimes we can come accross as being "difficult" parents, we dont get up each morning with the aim of making your day harder but as the parent of a child with a rare condition it is our job to make sure that our child's needs are met. We dont expect you to have a full understanding of there condition because lets face it, you are unlikely to come accross it again, but work with us. We live with it 24 hours a day 7 days a week. Talk to us, explain things to us. I am always happen to educate people on Sarah's condition, but understand when you show fear in your eyes, when you hesitate, when you become nervous you are making me even more nervous.

As a parent I will never growl under my breath whenever I see a child come to emergency not looking an worse than my own child who has been waiting for hours to be seen already go immediatly through for assessment.

Often the real dangers are hidden under the surface

Unchartered Territory

Firstly I apologise to my blog followers for not updating in so long. As you can imagine from our Journey so far, life is shall I say interesting for us. There is barely a dull moment in this household!
I really havnt blogged much about my other children as I guess the purpose of this blog is to put down my rare feelings and emotions on life with Sarah, firstly it was a pregnancy journal and then well it turned into a place were I could blurt out my fears and then our journey in getting her home.
Our Eldest Child Kevin also has a Medical condition, a heart condition to be specific. It was never detected at birth and in fact wasnt diagnosed until he was 7. It was a very frustrating time. He had just been Diagnosed with ASD (Autism Spectrum Disorder) and his paed noticed he had a heart murmour, off we went for tests to learn that He had a Hole in his heard and the plumbing of his heart wasnt quite right. So he had a Atrial Septum Defect and PAPVD.
We then got a rude awakening to the health system in Australia and the Red Tape, I was tearing my hair out. There were waiting lists everywhere, infact the waiting list for a MRI was 5 months! It was ludicrious and I was furious.
It took us over 12 months to navigate the red tape and waiting lists and after 5 cancelled surgeries we finally had a date. Tuesday the 16th December 2008 he would have his surgery. It was going to fit in great, we could get him over his surgery by the time our baby arrived at the end of January.
Well as you know that didnt quite work out so well and with Sarah in NICU, we made the decision to cancel Kevins Surgery, somehow the idea of Sarah in NICU and Kevin in PICU wasnt so appealing.
So Kevin Finally underwent his surgery in Feb this year. It was a very stressful day, his surgery was expected to last 6-7 hours but instead it went into the early hours of the next day and it had taken them 12 hours. He however was a champion through the initial recovery and was discharged home after 5 days!
I tell you though watching 2 of your children undergo Open Heart Surgery within 3 months of each other was quite draining, as a parent its one of the hardest things you do. You hand your child over to a surgeon and until they surgeons emerge from theatre you have no idea what is going on. When Kevins surgery went so far over the expected time I become more and more anxious by the hour. I was relieved once I was able to get into PICU and see him. Although its so different seeing your baby on a Ventilator compared to seeing your 10 year old on a Ventilator.
It was also a time of stress because as you know Sarah's medical condition continues to be precarious and she can go downhill rapidly requiring admission to hospital. I had no idea how I would cope with both in hospital on Different wards and still 2 more at home to care for, thankfully it didnt happen and Sarah was farily stable at that time.
So onto Sarah. Im so happy to advise that we actually havnt had an admission for about 4 months now, we actually had a great run of 13 weeks where we didnt even have to take her to the emergency department!
Someone asked me recently is she more stable? I dont think she is, I think its more that we now know how to treat very complicated situations.We have dealt with almost every Diabetic complication there is, and its easier to treat her at home than in hospital.
In April Sarah Featured on the Good Friday Appeal as a follow-up story to the 2009 story. You can have a look at the link here Good Friday Appeal 2010   May and June were pretty uneventful and we just juggled the day to day complications at home, some days hairer than the day before, but we somehow managed and I can tell you it was such a relief to have some time alone, without the hospital admissions and the hospital appointments and this and that and this and that, I felt for probably the first time that I was able to be just a mother and not a Mother, Nurse, Carer.
July has been a very challnaging month. This month we have seen gastro, tonsillitis a viral ear/throat infection and Bronchiolitis, including our first experience with inserting an NG tube!
We seemed to be able to limp her through all that without an admission and I was very impressed with myself.
Then last Thursday Sarah had her Checkup with her Paed at the hospital. Now firstly her Paed is second to none. He isnt only her Dr either, he advocated for Sarah around the clock. He is very aware of our family unit and my desire to keep her home whenever possible.
So at the checkup he was very impressed, the last appointment was wasnt really sitting unassisted and this time she isnt just sitting on her own, she is now even crawling!!!!!!!!!!!!!
I'd discussed my concern with him about her Color, her skin has become very pale over the last 6 weeks and I was concerned that maybe her haemaglobin was dropping to low levels again.
He agreed that she did look pale but given her last FBC her levels were good at 126, he didnt want to have to draw blood if he didnt have to, so we decided to wait it out and see if her color got better over the next few weeks.
So as I was leaving, very happy that we got such a good report I asked one of those "by the way" questions.
I had noticed over the last week that her Stools have been very pale. Think the color of a Manila folder or the color of cream and yep thats the color Im talking about. Id only asked him as I had wanted to send off a sample to check her for Malabsorbtion.
Well he said can you go and change her and bring me a sample, but I hope its not as white as you are saying it is, if it is this could be serious.
So I bring the sample back, he takes one look and picks up the phone to page our Gastro Consultant.
So he explains to me that even by looking at the sample he can tell me its not malabsorbtion but what it is, is a problem with her Liver. There is no Bile in it and if there is no bile in it, the bile it pooling in her liver causing irreversable damage.
Many of you would remember that in Decmeber Sarah had an MRI which picked up a problem with her Liver. The condition is Primary Schloising Cholangitis. Its basically a condition where the bile ducts are malformed and the restrict the flow of bile. There is no cure for the condition, the only option is Liver Transplantation. However is mostly strikes people in their 30's-50's so there is very little data of Paediatric patients.
We were sent for Bloods on Friday which confirmed there appears to be some type of blockage in her bile ducts and the most likely explanation is that they have collapsed.
She is booked in for a Lover Ultrasound and Biopsy tomorrow morning, once that is done we will have a far clearer picture of whats going on, but her stools still remain white and she has now started itching all over, not a good sign. The most likely solution will be surgery this week to place stents in her Bile Ducts and start the process of Liver Transplantation.
And I guess that is what brings us into unchartered Territory, all the way through this journey Ive been able to have alook into a Crystal ball in a way. There is a little boy accross the tasmin that has the same condition and he is 6 months older than Sarah. But Finlay doesnt have ther Liver Condition and of the surviving children Sarah is the only one to survive with Liver problems, so we are on our own on this one.
So please say a prayer tonight for our little girl. I dont expect good news tomorrow, just have that feeling. But what I do know is we will fight this head on whatever the future holds for us.
 EB Bloggers
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Our Recent Hospital experience and feeling disappointed

 I dont often blog about in the inside working of the hospital, as on the whole they have been terrific and without the Drs involved in Sarah's care she wouldnt be here today, so I always feel in two minds about our experience there.

But last weekend we experience a systematic failure, one that may have drastic conseqences for Sarah.

Last week Sarah had immunisations. I dont think Ive gone into detail about her needles before, but Sarah seems to have adverse reactions to most immunisations. But the consequences of her contracting the disease themself outweigh the reaction she seems to get.

So due to the reactions she has been on a catchup schedule. Last week she had 3 of the normal shots, plus her second dose of the swine flu vaccination.

She has also been battling a chest infection/Bronchiolitis but she wasnt too bad, so the decision was made to go ahead with the immunisations. That occured last week.

On Friday she seemed better from a chest point of view and we sighed relief that we had escaped a hospital admission.

A few weeks ago we got accepted onto a program called ACE. Its accelerated care through emergency. Basically if your child needs to come into the ED you call a mobile number and talk to one of the nurses, they inform emergency and when you arrive your child has already been traiged and there is a cubicle waiting for you. Your childs medical history is waiting, the medical team is informed and you are only seen by a Snr Dr who has a brief of your childs medical history and presenting problem.

So what infact happened on Saturday was.

I phoned ACE to say I was on my way in with Sarah. I thought that she may still be battling the end of the infection and needed a chest xray. When I phoned I was told that Sarah had been taken off the ACE program after discussions with the Diabetes Team, the Diabetes team had said they could provide the same service as the ACE program.

So I arrived in Emerg.. Sarah had not already been traiged, they didnt know of her impending arrival not her presenting symptoms.

I explain that she is very lethergic and had been asleep since 7pm the night before, it was now 1pm Saturday afternoon. The traige nurse came and picked her up. She briefly opened her eyes, eyes rolled to the back of her head and she closed them again. She was also hypersensitive and was only waking to painful stimulas.

We were told to go to the clerk and then have a seat and wait to be called.

We sat in the waiting room for 1 hour.

We got called through to the cubicle. We were being seen by a Jnr Registrar. We waste the next hour going through her medical history when she says something that sent my mind spinning

"Why do you check her blood sugars"

I hold my composure, thinking surely someone has informed our Medical Team we are in emergency

Dr says Im going to take some bloods and do a chest xray. Sarah is lethargic as Im sure she has a bacterial chest infection. Will check xray and give you some oral Anti's to go home with.

Its now 4pm and Sarah is still asleep, waking only to painful stimuli, hypersensitive and when you pick her up her limbs are rigid. The same as she had been since arriving at the traige desk.

At 5pm the Dr comes back, The nurse expresses concern that this is not a chest infection and the Dr says Ill just check something with the consultant.

The consultant comes and and has Sarah moved to Resus.

He quickly puts an IV in, while explaining that she is in a constant seizure state and administering Midazalam to interupt the seizure.

Now I sit here, my mind still reeling at this systematic failure.

1. Had we not been taken off the program, Sarah would have already been traiged, her medical team informed of our impending arrival, we would have been a Snr Dr immediately who highly likely would have picked up she was having a absent seizure straight away and treated her accordingly.

2. The Diabetes team are just that. They deal with Diabetes. Sarah clearly want going into emergency because of her Diabetes.

3. They didnt even bother to even inform emergency we were coming in. We sat in a waiting room for an hour, I then wasted another hour going through Sarah's history and answering questions like "why do we check her blood sugar"

So its now 2 days later and we are home, but Im utterly disappointed in how the health system totally failed my child. How one Dr who is no longer on her medical team managed to have her taken off a program critical to her care.

My mind is still reeling at how we managed to sit in the emergency department of one of the worlds leading childrens hospital for 6 hours before someone went to get more experienced help.

And the sad thing is, everyone would have gone home that day without another thought.

Sarah and our family dont have that luxury.

Inspiring Mums

I have alot to update on, but its late so I shall come back and blog tomorrow But I just wanted to Share this message. Another D mum that I met through Essential Baby Website sent me this message tonight. She has entered a competition about Inspiring Mums. 

My inspiring mum is a friend named Karina Caton. Karina gave birth to her 4th child Sarah on the 28.11.2008. Sarah was born 9 weeks early and weighing only 735g. We met through an online support forum for parents with diabetic children, but Little Sarah was different to the rest. She was actually born with no pancreas, among other health issues including needing both bowel and heart surgery.

Sarah is a fighter, in hospital numerous times and I dont belive she would be here if it wasnt for her wonderful mum (and of course dad) Sarah was given a very slim chance of living when she was born.

Karina is a fabulous support for all other mums of diabetic children, often giving us advice when it comes to issues we may face. But all along, she knows life with Sarah may be short. Sarah is the only child in Australia to be born with no pancreas.... See more

Just before Christmas the family were dealt a blow when their house was burgled whilst at the hospital with their eldest son, who was having tests for his own heart surgery. Karina went on National Television pleading for the return of her most precious item - pictures of Sarah from when she was born, the only thing that could not be replaced.

Plus then in late January, they dealt another blow finding out that little Sarah would need a liver transplant within 6mo to 5 years - depending on how quick the disease progresses.

I thought my life was hard being a single mum to a 4yo type 1 diabetic, but when I reflect on my own life and Karina's, I realise I am not so bad. Not saying that Karina's life is bad, but as the parent of another diabetic child, I wouldnt wish this on anyone, let alone all the other health complications little Sarah has.

I have never met Karina as we live in totally different states, but I really do believe she is such an inspiration to mums out there. We have formed a close bond and I am glad to have met Karina, although I wish it was in better circumstances.

I have met alot of inspiring mums in the last 12+ months, so many have given me strenth, inspiration, courage, support and kindness. The friends have I have met especially through the essential baby website and also through a Diabetic Mummies Morning Tea group that I am part of are truly inspirational. They give me so much support, I have no idea where Id be today without each and everyone of them.

So do you have a inspirational Mum story to share, if so Id love to her them. If its ok with you I will post them here on this blog.

A Long Week

What a long week its been, am incredibly happy that its almost at an end.

We had the meeting with our Gastro on Monday to discuss the results of Sarah's MRI. She has a condition called Scleroising Cholangitis, I had already read her MRI report and spoken to her General Paediatrician and we were hoping that she had Primary Scleroising Cholangitis but she however has Secondary Scleroising Cholangitis

Secondary sclerosing cholangitis (SSC) is a chronic cholestatic biliary disease, characterized by inflammation, obliterative fibrosis of the bile ducts, stricture formation and progressive destruction of the biliary tree that leads to biliary cirrhosis. SSC is thought to develop as a consequence of known injuries or secondary to pathological processes of the biliary tree. The most frequently described causes of SSC are longstanding biliary obstruction, surgical trauma to the bile duct and ischemic injury to the biliary tree in liver allografts. SSC may also follow intra-arterial chemotherapy. Sclerosing cholangitis in critically ill patients is a largely unrecognized new form of SSC, and is associated with rapid progression to liver cirrhosis.

Aside from transplantation, there are no effective treatment options for SC; the median survival of patients with SC who do not undergo liver transplantation is only about 13 months.

We talked about a new medication we can try to slow down the progression of the condition and I asked the dreaded question of how long would her liver hold out before a transplant would be needed. He couldnt give us a answer but we will repeat the MRI in 6 months to see how quickly or slowly it is progressing, but he said it could be 6 months or it could take 5 years, so for now we place our heads back in the sand and he will let me know when to pull it out again.

We headed away last weekend back to my home town for the BILS 30th Bday, it was a great night (we were all in Fancy Dress!), however on Sunday Sarah spiked a raging fever and was starting to become irritable. I put it down to teething, we went to visit a few friends and headed some Sunday afternoon.

Monday morning she still had the fever, so gave her some panadol just to help bring the fever down, she was very happy in herself just had this fever that started out of nowhere, by about 10am she started getting a wheeze and at about Lunchtime she started grunting with each breath in and out. I called her Paeds know already knowing Id be making a trip through the ED. I said I had the appt with Gastro but then Id bring her to Emergency.

I could tell her Gastro Specialist was getting nervous with the grunting so we wrapped up the appointment and he came down to emergency with us.

Straight from Triage into resus, where she had the Drs abit stumped, she had a fever of over 40, grunting, resp distress but her oxygen sats were 99%, they put a IV in, got bloods and ordered a xray. Her paed team had now arrived and were sure that Sarah had Pneumonia, they wrote her up for IV anti's and said they would see us on the ward.

Well the Chest Xray come back and there was no change from her December Xray, so back to the drawing board, where was this fever and resp distress coming from?

They then though that maybe she had an ascending cholangitis infection which is a infection inside the bile ducts, but then her bloods came back and infection markers wernt indicative of that either.

So it left one thing to check and that was her urine, the hospital always do a SPA as its a sterile collection in babies, so it involves sticking a needle through the abdo and into the bladder and drawing out a sample of urine, she has had them in the past and hasnt had any issues, well this time they missed so they decided to use a cathetor.

One of the worst experiences to date, the Dr tried unsucessfully 3 times to insert the cathetor all the time Sarah was just screaming, the resus nurse had a try and thankfully she was able to get it in.

The sample looked clean, so they were again scratching there heads, her bloods were back and her White cell count was down, so they were thinking it was a viral illness, so the plan was admit for 24 hours and if fever went up again, start Anti's just incase.

By tuesday morning the grunting was gone, her blood pressure had returned to normal as it was 138/77 which is high for an adult let alone a child and her heartrate had also come back to normal range. So her Dr said we will just observe overnight again and if all is good will go home tomorrow.

So to my surprise on Wednesday they got the culture back on her urine and it had returned 2 bugs so Anti's it was to be, she was given one dose IV then switched to Oral Anti's.

Her Paed then came in to see me, we had a outpatients appt for today, but since we were in he came to our room to do it to save me coming back in tomorrow.

He started off with the chest xray. Remember how the xray had no change? Then it dawned on me. Her last xray was when she collapsed her lung after the MRI. Then he handed me the xray report

"Persistant Perobronchial thickening are present. Atelectasis bilaterally with further change at the upper right and left mid zones appears unchanged from Previousily. Appeareances are inline with Chronic Lung Disease"

So we are home.

We now add Liver Disease and Chronic Lung Disease to the list.

We are feeling very mixed emotions. The CLD is more than likely caused by the recurrent bronchiolitis, which she continued to pick up in the hospital. She will grow out of it and her lungs will get stronger again, but in the meantime she is more suspectable to respitory infections, which then triggers off her diabetes, which triggers off her Malabsorbtion and the vicous cycle continues.

I want to cry, scream, vent, and hide away.

But I dont, instead I smile and laugh because if I didnt, I would do the sentence above.

A Nervous Wait Yet Again

Its times like these that I am forever thankful for this blog, its a place I can come to put all my irrational fears down, a place just for me where I dont have to hide my feelings and my fears.

In early december Sarah underwent an MRI on her brain and abdo, primarily it was to have a look at her brain. As she was born so tiny she suffered an Brain bleed which is very common in micopremmies, scans at the time showed the bleed but only time would tell if it had caused any damage. Then after her cardiac surgery she started having absent seizures so they wanted to do a MRI to rule out any brain damage and CP. The good new was that there is no damage at all, a massive sigh of relief.

Since she waws undergoing the MRI under a general they decided they would also scan her abdo to check and see if she had any remaining pancreatic tissue and to detail her Anatomy.

There has been some long standing concern about her Bilary System. Of the documented cases of Pancreatic Agenesis 50% has malformations of there Bilary System and 30% had heart abnormalities. Being that Sarah didnt have any heart abnormalities ( the heart condition she had was related to prematurity - PDA ducts are very common among premmature babies), there was a high probablility that she was going to have some issue with her Bile Ducts.

I remember clearly my very first meeting with Sarah's Genetics Dr. Sarah was in NICU and a few weeks old, it was not long after John had told us that she had this rare condition and it was unlikely that she would survive as her Liver appeared to be failing rather quickly. The genecist came with these case studies and said it looked like Sarah had a problem with her bile ducts, especially given her early gut problems.

One way we would know for sure was for Sarah to have a HIDA scan and then came the bad news "She is just to unstable and small right now for it" She needed to be able to cope with a GA and she needed to be about 2 kgs.

You might all remember my countdown to 2kgs and the excitment that bought when she reached it. The 2 kg club was to be a massive milestone for Sarah. Firstly that was the magic mark in which she could have the surgery to reconnect her bowel and reverse her illeostomy and it also meant she could have the HIDA scan.

Well the surgery was booked and when she finally passed a bowel motion is was elation! Then the worse fear happened and she became septic and ill once again, she pulled through and the race was on to finally get her home. We decided together (John, myself, care manager) that since she was passing bowel motions and her LFT's were coming down we would postpone the HIDA scan.

So when the MRI results came in I had her General Medical Team come to give me the great new that her Brain results are absolutely fine.

Her endocronologist was on holidays and returned last week and she emailed us with the results.

In a nutshell, her MRI brain was normal which is great; her MRI abdomen showed no pancreas or gallbladder. We essentially knew about the absent pancreas from her ultrasound and surgical findings as a neonate, but I think it was worthwhile documenting that there was absolutely no visible pancreatic tissue given her recent swings in BGL. The absent gallbladder is not surprising as it originates from the same developmental tissue as the pancreas in the fetus. She also has some abnormalities of her bile ducts in her liver.

Her geneticist then called to say that she too had looked at her MRI and noted the Abnormalities of the Bile Ducts and explained it was called "primary sclerosing cholangitis" or PSC. It has been encouraging to know that her Enzyme counts are still just above normal and she hasnt got any real noticable Jaundice at this stage. The MRI shows that she already has beading of the Bile Ducts and the geneticist was going on a search to see if any of the other PA children had survived the Neonatal Period with PSC. She explained that there is no treatment and no cure, but a bandaid solution is a Liver Transplant, but Sarah wouldnt need one for probably another 2 years.

I have tried to be fairly optimistic and the past week Ive had numerous phone calls from RCH about these MRI results. Have you been told of the results? Have you been in contact with Gastro? Do you have any questions? Has Sarah been itching? Is Sarah well at the moment?

Well by Sunday night it was doing my head in. Why all the phone calls and email? What is the urgency? Surely if there was a serious problem her Gastro Specialist would have called, since this is his area of speciality?

So I emailed him.

My only other concern is her recent MRI results. Ive had emails and phone calls from her endocrinologist and her genetics Dr in the past week to discuss the results, but I figure that you are the expert in this area, so you would be the one to discuss the results with. We have an appt with you early March, can we discuss the results then?

From speaking with genetics I understand that it was going to be highly probable that there was going to be a issue with her bile ducts being that it comes with the syndrome, but the abnormility that was picked up on the MRI is it likely that it wont be progressive? in that its just part of the syndrome and its likely that its always been this way and its not progressive?

I guess what I wanted to hear was. "Yes Ive had a look at the MRI and we will discuss at our next appointment.

We are scheduled to see him in 6 weeks, I figured its not that far away. Sarah is currently in amazing health.

So yesterday I trotted off early in the morning to the health nurse for Sarah to be weighed, then I had another appointment and I hadnt even given my email to Tony a second thought.

When I got home yesterday our Social Worker had called asking me to call her back. So called her back we discussed a few issues at hand and then she said well Ill see you on Monday.

Monday? Whats on Monday? You must be mistaken. I have an appt with John on Wednesday and with Daryl on Thursday. Then she said did you not get Tony's message.

My heart sank. I froze for a moment, then pulled myself together and said hang on Ill check my emails.

And there is was

Dear Karina and Michael,


We certainly need to meet to discuss the MRCP results - I do have a clinic next Monday 18th Jan - would that be convenient? We could meet at 3:20 in the afternoon.

Our Social worker has said that he asked her if she can attend the appointment :( Going on previous experience there is only one reason a Social Worker is requested to attend a meeting.

So while part of me is optimistic that its simply that he has had a cancellation, I just know deep in my heart thats not the case, and what is so imprtant that it cant wait just 6 weeks until our next scheduled appointment.

So now I need to try and distract my mind for another 6 days thinking of all the possibilities of what is going to be told to us, why he has requested Social Work support at the meeting and what this all means for Sarah.

I guess its just so hard to have fought and fought and battled and battled to get Sarah to where she is today and I dont know whether deep down, I, Michael and Sarah has the strength for another battle, things have been going along so well in the last month, I just dont wont to hear any bad news right now.

2010 was meant to be the year of happiness and health and well its not looking to positive

Anyway I am signing off here, sorry for such a negative posting. I am just drained and needed to get that out somewhere

2009 - A year in review

Dear Sarah,


Well its been a long 12 months, so I thought Id write this note to you so when you are older you know just how far you came in the first 12 months.

12 months ago today we arrived at the hospital to be introduced to "Ruby", you now sleep with Ruby every single night and Ruby is the bear with Diabetes so she is just like you. As you get older ruby will help you with your Diabetes, one injection for you, one for Ruby.

Arriving at the hospital that day we knew deep in our hearts they were going to tell us you had Neonatal Diabetes, we just had no idea it was because you didnt have a Pancreas, at the time to us all it meant was you would need insulin for the rest of your life, oh how we wish it was that simple!

You were laying there in your humidicrib and had just received your 5th blood tranfusion, not bad for a 5 week old! You weighed a massive 1016 grams!

You achieved so much over the next 3 months, we were told that you have a very slim chance of survival and that we should think about making arrangements for you.

Every step of the way though you showed everyone that you had the strength to fight this. You battled NEC twice, you battled bleeding in the brain, you battled the continous fluctuation in blood sugars, malabsorbtion, lung infections the list goes on.

We were over the moon to bring you home after 16 weeks, it was the absolute highlight of 2009, you defied the odds and the Drs and you never gave up.

The next 3 months saw you settling into life at home, we had many Drs appointments and we still struggled to control your diabetes, but 3 months after being at home you had grown from 2500grams to 3700 grams - not bad considering all you deal with.

Between months 7-10 it was tough - you got sick in July and the Drs had no idea what was going on, you battled a bad reaction to your immunisations which landed you in hospital for 11 days with a stay in PICU just for good measure! You battled chest infectioons and Pneumonia numerous time, you ruptured your ear drum and went into Diabetic Ketoacidosis, but you battled through it all and continued to grow and amaze us.

Months 10-12 were an amazing time. We learnt alot in these months. You went into cardiac Failure and had open heart surgery, you scared us after the surgery with another emergency call but you bounced back and came home 5 days before your birthday.

Your Bday was amazing, I was so elelated that we made it, it was such a fantastic day and you looked so so healthy and happy. Your nanna and pa even came from interstate to help you celebrate.

The week after your bday you had to have a MRI. You had another reaction to the Anaesetic and took 12 hours to wake up. You then collapsed a lung and got Pneumonia again. It was a nervous wait for your results. Finally the results came in and we breathed a sigh of relief that your seizures hadnt caused any brain damage.

We found out that you have a condition with your bile ducts. There is no treatment and no cure, only baindaid solutions. We just know with the strength that you have had over the last 12 months that you will give it everything you have though.

You have taught us so many lessons over the last 12 months, you have introduced us to people we would have never known. You have shown us strength that we didnt know we had. We are so very thankfiul for that.

My precious girl - We made it. Im declaring a new year! You were never expected to see 2009, so to be here with you seeing in 2010 makes me incredibly proud. Here is to a year of happiness, tears, joy and healthy times ahead.

Happy 1st Bday to our Princess

Happy 1st Bday Sarah

We actually made it!!!!!

Its been about a month since Ive updated, so I promise to update alittle more often, time just flies by so quickly and I need more hours in the day.

We have had a massive month - As normal its been a month of highs and lows but its great that we have more high's than lows and talking about in general here, will get to Blood Sugars further down the page!

First event of the month was Sarah perforating her eardrum earning herself a 2 day stay in hospital, for a ear infection of all things

We then took Sarah on a plane trip to meet Michaels side of the family early November, it was great to get away for a few days and Kevin, Jess and Cooper got to spend a few days with Nanny Caton. It was a little quiet though with only Sarah with us, Here Sarah is with her Great Nanna, a photo to treasure

We came home and prepared for Sarah to have another Surgery! the day before we left Lismore to come home Sarah started sounding congested and I was optimistic that it was "just a cold" and would pass quickly. However we arrived home and the next day Sarah had an appointment with her Endocronologist, she was sounding quite congested and off her feeds a little but she wasnt that bad I didnt think. We see her Dr and straight away she said to me " She looks and sounds like she has Bronchiolitis, you are going to have to take her to emergency to have her Sats checked and have her checked over by the Gen Med team. Her sats were fine but her feeding was well down so they kept her in for a few days.

This helping in the anticipation leading up to her Heart Surgery. I was far more "relaxed" about it then her other surgeries and infact was more stressed about her Diabetes Management than the surgery itsself!

The Surgery went off without a hitch and after a long day waiting she entered theatre at 230pm, it was expected that the surgery would take about 2 hours. At 430 there was no word but history told me that were always optimistic with Surgery times and had ran overtme on the prevous occassions so we wernt too worried. Finally at 530 we got the call from her surgeon to say all had gone well and she should be in recovery in the next 15-30 mins. So I walked DH to the car as he had to get home to the other kids and came back to the waiting room. However at 630 I still hadnt been called through to recovery so started to worry, I went and rang the intercom and was told they had a few complications getting the breathing tube out and it would be about another hour. I paced up and down that waiting room just taking depth breaths and driving Michael mad with phone calls to try and pass the time.

Finally I got called through about 745pm and the relief was amazing, Sarah was still rather drowsy but she did open her eyes just to let me know she was ok.

The Anesthetist came to talk to me about a few problems they had collapsing her lungs and getting the breathing tube out and to check her stats. She was going well, was on a little bit of oxygen, but her heart rate and resp rate were great. The surgeon had used a local anesthetic at the wound site and he explained that it would soon wear off so they would start a Morphine infusion. An xray man came to check the central line was in the right place and then we headed up to the high dependency ward.

Once up there the cardiac resident and the 2 nurses that were going to be looking after Sarah were getting a handover from the recovery nurse and they suggested I go and get a coffee while they settled her in.

I went downstairs to call Michael and as I was talking to him on the phone I heard what no mother wants to hear. "MET 7West Rm 3" A MET is Medical Emergency Team or commonly known as a Code Black. I raced up to the ward and the hospital were calling michael to let him know what had happened. When I got up there, Drs were everywhere. Her heart rate dropped into the 60's and her Sats into the 80's. She scared the living daylights out of me. They turned the Morphine off for a few hours then turned it back on at a much lower rate. One lesson learnt is that Sarah is extremely sensitive to Morphine.

We came home after 5 days, Sarah is just such a little trooper,

So we thought we were in the clear for her birthday when last week I woke Sarah in the morning for her feed and she was a little out of sorts, she had her feed and brightened up a little. I had an appt that day with her Cardiologist and he had one look at her and sent her around to emergency. I was standing at the Triage desk and she went all limp and floppy and the nurse grabbed her from me and said she is having a seizure. After being assessed they decided she would need to come in for some tests to see if it was seizure activity. She had a EEG done and was booked for an MRI. The EEG didnt show any activity and we ended up coming home the next day without the MRI as there was a 2 week wait on the inpatient list, so we are on the outpatients waiting list. Due to her coding after each surgery they are booking her a bed just in case as it will need to be done under a General.

So the 28th of November finally arrived and what a wonderful day it was. Sitting here now on Monday morning and I can reflect back on the last 12 months, it has certainly been the most challanging 12 months of mine and Michaels life, its been filled with so many different emotions and Ive learnt so much about myself and about the world and how cruel life can be, but Ive also had so many happy memories, Ive seen absolute miracles happen right before my eyes.

I was going to update on how Sarah is going but Ill leave you with a photo of Birth and yesterday and come back later with an update on Sarah herself.