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

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