Wednesday, March 10, 2010

The hard questions

Do you have the courage to ask the hard questions regarding your child?

I like to think I do.  Usually I'm all about the questions.  I like to have as much information as possible - it helps me feel in control.  I have become quite informed about Ashlea's medical conditions.  I know what she can and can't do, and roughly what she is expected to be able to do (physically anyway).  I know a lot about kidneys and kidney transplants, cerebral palsy, botox, vision impairment, diabetes insipidus...the list goes on.

But I realised today that I have never asked any of her doctors the hardest question of all.

What is Ashlea's estimated life expectancy?

I was actually quite surprised to realise I hadn't asked any of her doctors that question.  Especially considering that ever since her early arrival and dramatic NICU journey my underlying fear has been:

Will she die?

Whenever she is sick, whenever she is in hospital, whenever there is a setback my mind immediately jumps to:

Will she die from this?

I am sure other mums who have had critically ill children can relate to this fear.  Some of the people who read this blog have children who are still very sick, and there are even some who are being managed by a palliative care team. I am terrified that that is where we will end up again.  Back in ICU, on full life support, being forced to think about "what is in Ashlea's best interests" - translation "do you want to continue with treatment".

[Please tell me I'm not the only tramatised parent who thinks like this]

I don't think you have to be a genius to work out that maybe the reason I haven't asked the question up until now  is because I have been terrified about what the answer might be.

I am ready to ask the question now.  I am pretty sure Ashlea does not have the same life expectancy as a 'regular' person, but I am pretty confident that it would be measured in decades rather than years - which sounds pretty good to me.  Much more than what we expected back when her survival was an hour by hour achievement in the nursery.  So I am going to ask the doctors the next time we see them - not that I even really expect they will be able to give an answer.  None of us has a crystal ball, but I think it would be helpful to hear from the doctors how long they think she could live for - hopefully it will help me to set aside some of the fear that has been controlling me for the last 4 years. 

Am I the only one who worries about stuff like this?  Have any of you had similar discussions with your children's doctors?  Or am I just going crazy??

6 comments:

Sarah said...

I don't think your crazy at all!

After your traumatic pregnancy with the girls, NICU experience and Ashlea's serious ongoing medical conditions I think it is very normal to question this.

I know even with Violet everytime she is admitted for her epilepsy and/or shunt related problems, Dave & I both wonder if she will get through it when we see her declining so rapidly. Espcially when ICU visit you to discuss how they will manage her if she doesn't get better. Also the fact that we don't know quite what caused Violet to be Violet, and as a result they are not even sure if she may haemorrhage again.

I think to actually ask it straight out could be quite confronting for you depending on their answer, and sometimes in my mind as much as I worry about the future, I also think sometimes it's best not to know.

Hope that made sense, xx

Anna said...

When we got Ryley's diagnosis we were told that the average life expectancy was 2 years for his syndrome. It was outdated information and considering he was 2 years at that point we wondered about the research.
For the first 4 or so years of Ryley's life he was very ill. Even now, he is at his healthiest and there are still many many health issues(his daily seizures and the pressure that places on his body is the worst bit).
We had to come to terms along time ago with the fact that he will be lucky to make it to his 21st. We know that one day, his body will say 'enough'. His time will be up, his work here will be done.
Even though we have talked about it and have acknowledged that he will die before us, it doesn't make it any easier to cope with.
I dread the thought of losing him. I honestly don't know how I will survive.

I guess that's why we do our best to make the most of life NOW. If we focus on the future too much then we will rot in a pit of self pity and misery. That isn't good for anyone.

It is just another reality we have to accept.
I do worry when Ryley gets sick. I am an expert at nursing him back to health. We have come close to losing him so many times, yet he has always fought back.

Hate it though. Hate it Hate it Hate it.

ferfischer said...

You're not the only parent who wonders about this stuff! I'm not ready to ask those questions yet for exactly the reason you cite here - I don't really want to know the answer. But, I think you're in a really good place when in your gut you have a feeling for the answer and can handle it. Hugs!

n0thingbuteverything said...

Wow. You're right. That IS a hard question.

When S was in the NICU, I asked a lot of questions about the future, even the distant future and my husband got really cross with me - telling me I was adding to my stress levels over something that might never happen. For me, he was right. I stopped asking the BIG questions for which the answers were very unclear and instead focused on the little questions - I went from asking questions like 'Will he ever walk?' to 'When can I give him a bath?'. It was the best advice my husband's ever given me ;-).

Having said that, S has not had any hospital stays since birth. We've been incredibly fortunate that he's not developed any medical problems that would have us concerned about his life expectancy. I hope he lives a long healthy life.

It would be different for me if things were different for him. BUT the question as big as your big question still remains - would any doctors actually, really know the answer? When I read what Anna wrote above about her son (and what a beautiful heartfelt piece of writing that is Anna!) and what Sarah wrote too, I am reminded yet again that while there's a lot that doctors DO know, there's also an awful lot they don't know. And I am guessing one of the things they won't know is the answer to your BIG question. They might be able to make an educated guess, but that's about it, I reckon. There's also the fact that we're living in an amazing time of research and development where who knows what treatments and therapies might become available to help Ashlea into the future.

You're definitely NOT going crazy to think about these things. And let me tell you again just how much I LOVE the amazing way you honestly and clearly convey your thoughts and feelings on your blog.

Hugs!
Dianne
xo

Mo said...

I have thought about this before...but as soon as it comes to mind (which has only been a handful of times) I switch gears and the thought goes away. I DO NOT what to know the answer for fear that an answer could over-shadow the joy and bliss that comes along with the unknown. A healthy person may pass and leave this earth tomorrow so taking life day by day is the way we choose to live.

Hugs to your sweet girls!

Gina said...

Alison
I come from a different place where our first child, Meg had died in infancy so with Mac we learnt to ask the question straight out - we also wanted to have control of decisions. We got tired of the power plays Doctors and nurses like to play by telling you things were 'touch and go' when you knew by the numbers, the colour, the sats and stats of your child that wasn't the case. In one instance we called meeting with the Doctors on Mac's case and said, "right, we need to know the process if he is "touch and go" as you say then what is involved if he is going to die, what are the preliminary stages, what are the triggers etc". We explained my husband had to go back to work, we weren't made of money, Mac had been in hospital for some 2 weeks with that illness (post brain injury) and since he had already accumulated some 200 days in hospital prior there was an end point to how many days my husband could take off. We wanted them to explain what would be the trigger for me calling my husband to tell him to 'get back here' and advised them we didn't care how many false alarms we had because that would mean Mac pulled through.
Not surprisingly when we put the question to them they always backed off and gave us the 'true picture' not the crap they 'trot out' to make themselves seem important or 'godly'. That's not to say we haven't had the 'talk' we have on four occasions when things have been completely dire and Mac was unlikely to survive out the hour - we have said our goodbyes to Mac each time. Sheesh, we've even offered up his organs had he not survived (I have since learned you can't donate from death by organ failure). I guess for me death doesn't scare my like it once used to. Your life is your life no matter how short or long. We work on the basis that we all have a job to do here on earth, some of us get it done much quicker than others. Regarding Mac's life expectancy I know that with the right diet, choice of therapies etc he should have a life expectancy well over 60 years, but I don't care if someone turned around to me and said it would be 10 years, I don't think anyone really knows. So we don't worry about 'expected length of life' just as we don't for ourselves but we do worry about ensuring a quality of life. And we don't let the medical profession get out of saying things like "touch and go" without backing it up with the facts.