Trach
Aria is doing really well. Â The trach is in and looking good. Â They are going to start weaning her sedation and start weaning her vent settings. Â I plucked up the courage to asked the big question- When are we going up to the ward? Â The answer – not while she is still on the vent. Â PHEW and double Phew!
I am still not 100% clear on the details about how much she will be on vent and if and when we can put the speaking valve on her. Â All I know is that she is making progress and we will take it a day at a time. Â The talk is to trial 4 hours on oxygen only and see but I don’t know if that means we can allow her to do some talking.
Aria looks great without the white tape on her face- bummer I left the camera at home but will take photos soon.
Yesterday was a massively tough day. Â Sometimes the reality of our situation comes crashing in and it is really hard. Â Aria getting the trach was totally the right thing to do and a really positive sign long term but still tough. Â My little girl has this weird hole and pipe in her neck and will have a scar there, not easy. Â Actually it isn’t as bad as I thought it would be and getting the ugly tape off her face is a bonus.
Our journey is fairly lonely at times, well actually most of the time.  Not saying we don’t have great support, 98% of the people in our big world are wonderful 1% are awful and 1% are absent but it is hard for people to understand the hardship we face.  And in turn it is hard for us to communicate cause it isn’t something we want to talk about sometimes or when people ask you don’t want to ‘dump’ on them or ‘bum them out’.
Anyway Aria is doing pretty good and I have been able to hear a few words, very quietly but Aria is great at making herself understood. Â Yesterday Asher came to visit after preschool and Aria and I had been talking about whether or not Ashie would like to eat ice like Aria does. Â Aria asked me to go get ice and let me put Asher on her bed. Â So they sat and ate ice together. Â Aria seemed happy to share and activity with Asher and Asher liked helping Aria. Â Asher thought eating ice with spoon was great. Â Both of them are such sweet kids. Â Asher is super caring with Aria.
16 Responses to “Trach”
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# 21 Apr at 12:00 pm
Great to hear the operation went well.
Praying for you all.
In Christ
Tony
# 21 Apr at 12:06 pm
What I would like to do most right now is give you a great big Mommy-to-Mommy HUG!!!!!!!!! (2 more months and I will do just that, btw) Heavy heart and tears falling. I know (a little) of what it’s like seemingly carrying the weight of the world on your shoulders and not being able to share the enormity of it with anyone. Just know you are being prayed for DOUBLY today!!!
I love you sweet friend!
# 21 Apr at 1:55 pm
Dearest Anita – with you in the bad days especially my friend. Much love and glad to hear Aria’s op went well. Prayers for some ‘hang out’ friends to drop in that you feel totally 100% comfortable to just be you, however that looks that day. Much love. X
# 21 Apr at 2:06 pm
We could never admit to understanding how difficult it really is for you guys. That could not be possible given the magnitude of it all but you are are always in our thoughts and prayers. Rest assured you are never forgotten. You are truly an inspiration.
Our love as always.
OXOX
# 21 Apr at 4:55 pm
Glad to hear that the op went so well.
will pray that stinit off vent goes super well. yes she has made progress. You aren’t reporting as many fevers, infections etc so be encauraged she IS improving little bit by little bit and God is with you every step of the way. Be assured although we may not have travelled you very tough road I admire your strength and courage to share not only the highs but the lows as well, that’s what makes this blog so real.
I wonder all the time how your day is going.
Go Aria, Go Anita-.
lyaine.
# 21 Apr at 5:01 pm
It was so good to read your post today.I knew it would be good to get the trach instead of the tube.Communicating with Aria will be great and she will love that. What a precious little trooper she is and so fortunate to have such loving parents and little brother.I just pray with faith each day and know God is with you all.
# 21 Apr at 8:01 pm
pleased to read Aria is doing well
praying as always for you all
You are never alone
God is always there right beside you
Lean on Him
HUGS
# 21 Apr at 8:35 pm
Loving you and hugging you today.
# 21 Apr at 8:37 pm
Great to hear the trach is helping and the op went well. You have such gorgeous children and I love hearing about their interaction.
Lots and lots of love, Steph and family xxxxxx
# 21 Apr at 8:53 pm
I’m sorry to hear that you had a bad day! Just know that God knows you will face many days of frustration (as you already have), & He knows you can’t face it alone; and you’re not. It’s okay to vent your frustrations & feelings. We are your friends, & we are here to listen, & to encourage you! I’m glad to hear the tracheotomy went well! Sounds like Aria & Asher are best friends! 🙂
# 21 Apr at 10:41 pm
I can relate to your feelings. My daughter (20 years old) had a BMT last year in Auckland hospital. It felt like we were in another world most of the time! And for you, a long way away from home – it must be so much harder. Hang in there and just take it daily, or minute-ly – and know you are not alone – even though I know it really seems like it sometimes!
# 21 Apr at 11:02 pm
I have a young girl in my facebook friends who spent the best part of a year or two when she was much younger with a trach as she had cancer requiring surgery right there (around her trachea/vocal chords etc). So she’s had lots of surgery at the front of her neck – and honestly, you’d barely know now. She’s a very typical teenager who posts about music and fashion and sometimes… boys! (I know if you’re anything like me, Aria won’t be allowed to date until she’s 25 – and even then, with a chaperone. 😉 ) My young friend is just gorgeous, as is Aria.
Lots of love. There isn’t a day that goes by that someone out there in the world (lots of someones, this I know) doesn’t wish things were so so different for you guys.
xx
# 21 Apr at 11:34 pm
I so wish I could give you a big hug right now. everything they do for your baby, no matter how important or how much better it is for you will be a dent in your heart. It is impossible for it not to be because she is your baby and as a mum and dad you feel everything. My heart goes out to you and my greatest hope is that you find a couple of dear dear friends who you can lean on and be yourself with over there along with with amazing people who are already supporting you. Hugs
# 22 Apr at 1:48 am
Anita, not one of us knows the real pain of your tears and disappointments and sadnesses and lonely times and ‘down’ days, or the extreme joy you experience in your ‘up’ days with each little tiny step forward, but we do love you guys enormously and cry with you and pray with you and hope with you and trust in our mighty God in your journey through all this-you may never know the enormous inspiration you have all been and are daily to so many-just keep on abiding in Him and remember you have an enormous army of friends surrounding you, day and night-thank you for the daily letters for us so we can ‘abide’ with you – love Jeannie
# 22 Apr at 3:57 am
Hmmmmm I love eating ice too!!!!
# 28 Dec at 1:02 am
We’re using up the fuels that had been made greater than 65 million years ago within the time of the dinosaurs.