Thursday, 16 February 2012

Reality Slaps You in the Face

What a long day!  We had a good day and a kind of heart wrentching reality-slaps-you-in-the-face kinda day.

It was a good start to our morning when we got to view the photo journalism article on about Braeden.  I just want to take the time to say how proud and thankful I am to Andy Nichols and his report.  It was powerful for me to watch and I'm living this!  Thank you for those of you that could take the time to view it.  I am hearing from more of you about donations and it is so rewarding to me to hear these selfless stories.  Family, friends and strangers alike have come together to donate in Braeden's honour and I've (unfortunately) have lost count!  Keep it up people, I spend every waking day in that hospital and Braeden is only one small child in a huge ocean of children there.

So onto the face slapping:
We had our multi-disciplinary meeting today which turned out to be a bit of a let down in terms of who we actually got to talk to but it was informative nonetheless.  Basically the good part of the day is that we are NOT going to surgery just yet (yay).  Braeden is thriving and growing on his continuous feeds and that is the main goal here.  He is able to maintain his airway on his high flow 5 litres of oxygen and can stay at 30% for the most part of his day (we breathe 21%, that is 'room air').  The only real issues we are still having are when the little turkey gets mad and holds his breath...not even more flow can fix that little quirk!  We got to get a good rundown from the Repiratory Docs and I think I got all of my questions answered in terms of his care.  I spent the entire day at the hospital today and had Braeden on his back to change him a couple of times and then had a little play time afterwards and he was sat-ing fine (maintaining his oxygen). 

His jaw seems to be growing because there are positions now that he can be in that he couldn't before, he would have occluded his airway and crashed before.  Of course there is also the opposite too, there are now positions that were "safe" that he now occludes slightly in.  It wouldn't be Braeden without some 'fun' thrown in.  Dr. Frank, the Plastic Surgeon, is happy with the decision to wait as well but he is really unable to predict how B's jaw will grow.  He did tell me that jaw reconstruction is a possibility if it comes down to it but that is way in the future.  I did ask about where he sat on B's condition (mandible size) whether he was viewing it as moderate or severe still and he actually said he'd be leaning more towards the moderate side now since he is thriving.  Yay.

The harsh part of all of this not doing the surgery is that we are in a waiting mode (still).  The Specialists are looking to let Braeden grow over the next three months and then we can go from there in terms of revisiting surgery options.  Why is that harsh?  That my friends means a bare minimum of three more months in hospital, most likely 6 more.  That is my slap-in-the-face reality that I was talking about.  Mike and I are already feeling stretched now and we've had the help of my Mom for the majority of the past 14 weeks.  It is a daily struggle to live two lives but it is what it is, we'll just have to keep on going, one day at a time.  There isn't a set-up to take home babies on high flow oxygen just yet, we are five years or so too early for that.  He could however go home on an NP tube (ha ha) but that's not really an option now is it?

I am happy with the decision, and not at all surprised as we've been seeing Braeden grow over the past few weeks.  I'm (we) are just trying to wrap our heads around the fact that he won't be home anytime soon.  The other big decision of the day is that B will be moving on up to the second floor in the next few days.  I don't fear the Unit 2 move like I did two weeks ago when we left the NICU but it will be a big change.  They do have what is called the 'gold' area up there that is kids with respiratory issues so they are watched more closely.  I do still have horrible thoughts of him screaming (still silently) his head off and no one knowing he is.  That again plays to the 'I can't be in more than one place at once' problem I've been having!  It's not that I doubt the nurses, I really don't, it's just that I know that they too can't be in more than one place at a time.  I need to focus on the positive, we will be out of Intensive Care for the first time in almost 15 weeks (not including my time in there before he was born). 

Braeden's Bunny that sleeps outside his window
I find it so hard to explain to people when they ask if he is home yet or not.  There is nothing about Braeden that is easy to explain.  It is hard to find the words to convey his condition(s) and we really have no prognosis at this point to go on either.  If I start to go into any of B's conditions then people seemingly get uncomfortable, they don't want to know that a baby can still be so sick.  I think people want to just think that everything will be okay.  Don't get me wrong, I would love to think that everything will be okay but I have to be honest here, there are still days that I'm not certain he'll make it to his first birthday let alone come home.  Hmm, I started to go back and delete that last line but it is the truth, as painful as it is to hear.  I know that that is one of the main feedbacks I've gotten from those of you reading this is my honesty. 

I think I sometimes feel the need to shelter others from the grief and intense worry that we feel at times (always worry), with Braeden but it's not been an easy journey and it really isn't being close to opening another chapter yet (like being at home).  Rylan opened the front door the other day as I was leaving to go to see Braeden and he said, "Mom, wouldn't it be so great to bring Braeden home some day, like tomorrow?".  Oh, my aching heart, how it would be so great. 

It is so easy to get sucked into the sadness of it all but then Braeden buries his head in my chest and it all releases.  He might be our centre of stress in all of this but he is also our light.  I see Mike's face when he is holding him and I know how my body and heart feel when it is me.  It really is the only time that I (we?) feel somewhat relaxed is when he is in our arms.

I've been thinking a lot about the kids and their relationships over the past week or so.  My Mom is concerned about Rylan and the role he'll have to play by being in between two 'special needs' brothers.  I'm thinking that if I raise a boy into a man who is compassionate and empathetic (way before his time) that I am doing something right.  We sometimes stress and are concerned that Rylie will feel responsible for his brothers and possibly resent it but then he does things like not being able to go into the basement at night unless he has his 'big brother' T with him.  How do you raise kids, typical or otherwise, to not resent the positiong of their birth in some way?  I don't think that is really possible.  I speak a great deal about Torin and all of his accomplishments that he's made since his diagnosis and of course all of the craziness of Braeden but it is Rylan that keeps me on my toes the most.  He is so much like his Mom that there are days that I wish I could snap it out of him so that he would be more like his Dad.  Rylan is such a cool kid, he really is the source of so much of my laughter and I guess it really is our jobs as parents to screw em all up anyhow isn't it?


ImaginationPlay said...

Oh Lia, as I am reading your post, my heart is telling me just how much you and Rylan at alike so it wasn't surprising to me to actually see you put it in print. The two of you are some really special kind of people. I knew that the first time I saw the two of you together. Yes, Rylan is a tender heart but he seems to know how to reach out at the right time at the right moment. "Listen to the Water".He is a wonderful special too. I can't tell you how much I admire your whole family and how much I learn more about the values of humanism each time I read another of your posts.

A loving heart is the truest wisdom. ~ Charles Dickens

Much love, Deb

Keeta said...

Yes, Ry is very much like you, I can hear it in him, and see it in his expressions and the thought processes on his face. And as your biggest sister, I too might have wanted to beat it out of you once or twice, literally and figuratively when we were much,much younger but I am very glad I didn't :) Cannot WAIT to see you xoxoxoxo