Tuesday, February 8, 2011

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

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...

Wednesday, December 1, 2010

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!

Monday, November 22, 2010

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

Tuesday, November 9, 2010

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.

Tuesday, October 5, 2010

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.

Thursday, September 2, 2010

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!


Thursday, August 26, 2010

The Artificial Pancreas

Im very excited.

I had a meeting with Sarah's Endocronologist. Her nice, friendly supportive endo, (not her origional Dr McMoron ph34r.gif )

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 ddance.gif