Perhaps it has finally dawned on us. The incoming attending (consultant Dr) hit the ground running last night and minutes after taking up the post for the next week, was up to speed on Reuben. I say up to speed, he was supersonic and as Jason says, the best salesman yet for a trach.
It suddenly feels like a decision over conscience. That dilemna every parent faces for their child. Are we doing everything we possibly can that's right for our boy? Have we lost too much time. The airway damage from the vent and reflux, prolonged intubation, the 10lb milestone today. Weeks of intubation has been shown in research to delay development, perhaps to the extent that it can never be caught up on. A trach for 3-18 months would give Reuben's throat the time to heal from swelling and granulomas, and critically, allow him to come home, to develop and growth in a natural surrounding. It's not the coming home for our benefit, it's the threat that continuing to try extubation, an endless round of throat surgeries and steroids may cause irreversible damage. Many of you have written about this in your blogging, emails and texts. The lens has flipped from macro to wide angle.
We do everything we can to stimulate him, spending hours with him, encouraging him with the wonderful development toys sent by friends, attempting to maintain positivity in front of him, even at times when our hearts our bleeding. But are we doing enough?
When seen like this, the trach becomes a bridge, a transition to a brighter future. We have to cross these waters, it's been too long. It's a critical turning point.
8 comments:
Catherine- I am so happy for you. I am happy that you are in that peaceful place of not being attached to one outcome or the other, and wholeheartedly finding the perspective from which embracing the greatest good for all above all else seems clear and simple. You are truly magnificent as you move through and forward in this unexpected journey - finding beauty and gratitude constnatly along the path. oxo, y
theres she is a catherine u should get a facebook and join yuka and so should erika id love to no u all better all the people thatpost to u somuch those two yuka and erika r so alike to me so like you so like each other and love u to hope that the trach as they say is the bridge for you love you to death
Dear Catherine,
A beautiful post and beautiful pictures. I hope that if Reuben does end up getting a trach it is exactly that - a bridge over troubled waters. We have no experience of it with our Jacob and I know I would have been terrified if it had been necessary for him. It is so hard weighing up what is the right decision for our children sometimes. I am sure all the stuff you and Jason are doing cot-side to help Reuben's development and play will have a wonderful effect. Your post really reminds me of the weeks Jacob was in hospital - four long years ago now. I also love the pictures of the nurses and doctors - these people you will never forget. Whatever happens you and Jason will get plenty of support from all the other parents who have experience with it, of that I am sure.
Alexis (Mum to Jacob, CHARGE UK)
Having reached a point of graceful acceptance and understanding that a Trach may be the best path for Reuben, to allow him to really thrive, I hope that Wednesday will not be approached with such trepidation.
Congratulation on the 10lb milestone, wonderful that he is now putting on the weight!
With love
Erica
The trachy seems like the end of the world but it honestly isn't. Alfie is thriving with his in and it will mean proper cuddles and the big 1, home! I am not saying it is easy, it's not but if it makes him safe and gets him home it is the 'bridge' you need. Fingers crossed you won't need it but enjoy that first proper cuddle if he does. Take care xx
The rollercoaster really doesn't stop, does it... you poor loves, such highs and lows, such enormous decisions to face time and time again. As always, you seem to find the necessary strength and acceptance to move forward. You (all 3) are amazing... as, I'm sure, are the medical staff that you so caringly write about.
BTW, how is it that you still manage to look so typically Catherine-like glamorous when you are going through so much? Have thought this with all the photos of you on the blog!
much love, Polly
Catherine,
I missed a lot in a few days, didn't I? Ten pounds! I was so happy to read your posts since last week's bronch. I just LOVE the picture of Reuben grabbing all those rings! Reading about your team was wonderful. The nurses, doctors, RTs, (and OTs, PTs, child life) - - they all have such big jobs... caring for the parents as much as they care for the child. John and I remain in close contact with a handful of "our team" at the hospital... but I digress.
I found tears in my eyes as I read that you and Jason have come to a peaceful place regarding the possibility of the trach. I have, for quite a while, hesitated to expand into great detail about our experience for a couple of reasons. Mainly, as much as I love the ability to blog and text, sometimes things are lost in translation without the benefit of our tone/expression, etc., especially if we don't know each other well! I wasn't sure that I could communicate effectively (especially since I often read/post in the wee hours) regarding the positives and negatives as I've seen them (not as they will be for you)... and hesitated to say the exact opposite of what you might really need at the moment. And... also, the fact is... there is just so much to share, I would hog the blog!
Getting her trach was not a bad thing for Gracie. Rather, it was the issues that led to the trach which caused her the most difficulty... the extended hospital stay at 16 months (10 weeks that should have been one), the lengthy intubation and heavy sedation (which led to a nasty period of narcotic withdrawal - - uncommon, but happened to her), the damage that was done to her airway... these all led to a turning point in her development... or perhaps better said... a "U-turn" in her development. If there is some blessing in the fact that Reuben is so young and going through this, it might be that although his development will be delayed (that goes without saying), he won't be starting over at nearly 19 months. Time is precious... experience (even at four months/especially at four months) is precious...
A trach is a means to an end... the end being your baby boy at home so that you can spend your days "staring into each other's eyes." (A direct quote, I think, from one of your wonderful posts when Reuben was home the first time.) Having him home is crucially important... on SO many levels... and it's clear from your post that you know that. The other end, of course, is a healed airway. If a trach is the "end" that is determined on Wednesday, then let it be a beginning for you all... :-)
With love,
Kristi
P.S. Erica - - I have told Catherine... and I must tell you. I am truly awed by your wisdom and understanding of a situation that is so complex. The bond of friendship and love that you share is evident... you can still walk right alongside Catherine, even from a great distance... and that is an incredible gift.
From MK:
Catherine,
Just sending you a little note to say i found myself absolutly overwhelmed and crying as i just read your update like blake and I do every time it's just that this time something moved in me just like when our lucas was born......sharing our stories..well..our lives together across simple words and lines on a page seem to go soooo deep. I wrote a song a few years ago called broken it is on my bands website here: http://www.therevealing.com/music/ i would love for you to listen to it...it came at a very disturbing and lonely time in my life and God seem to just write it for me and i simplly sing it.
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