Progress…..but at what cost?
Aria was on normal room air today since 7am this morning.  I had been quite uncertain about this but the team reassured me that her O2 stats were perfectly fine at the late to mid 90s.
But today Aria just was not herself.
All day we spent walking around in her wheelchair. Â This morning I learnt how to change her trach out so this meant I didn’t have to take a nurse with me. Â I don’t get half these rules but just do what I am told. Â Of course this means I have to drag an o2 tank, feed pump, bag of gear, stats monitor and wound vac all creatively screwed to an IV pole AND push Aria’s wheelchair whilst dodging people in a busy hospital. Â Either than or have her complain at me all day. Â I managed to eat my lunch at 2pm, finally, bites at a time. Â “yes Aria one min and we will walk- just let mummy eat her lunch’
She didn’t smile the whole day, except when they did a breathing treatment in the arvo and she got a whiff of 100% oxygen.
Finally at 7pm I put her to bed except she wanted to sit bolt upright and wouldn’t lie down even though she was yawning. Â And when she would slip down a little she would get upset and mouth Up!Up! Â Then she would beg to go into her wheelchair again.
I KNEW she was struggling- I could see it and no mother should watch her child struggle for air. Â I was just so upset and felt like no one was listening to me. Â Again I continue to be thankful I share this journey with my husband because he brought Asher in and took over.
Something I remember very vividly was when Asher was a couple of days old my midwife did the heel prick to get blood to put on that card to test for all those diseases. Â She said to me ‘Are you going to cry?’ I remember saying ‘Ummmm no of course not- why do you ask’ Â She said some mums cry when their babies heels are pricked. Â Then it dawned on me- I WISH I WAS THAT MOTHER! Â I wish I was the one that cried when her precious new baby got a little heel prick. Â Instead I have watched my daughter been prodded and poked and suffer and I felt hardened. Â Like perhaps I would of been the mum to cry but now I am changed. Â I love my kids so passionately that I would do anything for them but slowly I feel I am having to turn myself numb just to cope with what I see Aria suffer thru.
Asher and I left tonight and Hamish said they put her back on the vent and her face instantly changed and she lay down and went straight to sleep. Â The team and us are pushing Aria hard to work her lungs- but at what cost? Â She still deserves a life of smiles and play.
22 Responses to “Progress…..but at what cost?”
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# 1 Jul at 9:25 pm
Kia kaha Anita, be strong. Children like animals don’t hide their feelings or pretend things are ok. Perhaps it is thus ok for their mothers likewise to give way to their feelings (in the “privacy” of this forum perhaps!)You are bound to have less than perfect days but big picture-wise, all is going fantastically well.I am one of those “stalkers” who looks for your post every day, hoping for good news for you all.I will continue to look, and anticipate eagerly your continued progress!
# 1 Jul at 9:40 pm
Huge hugs Anita. Baby steps, Aria is doing so well, you are doing so well even if it doesnt feel like it. Thinking of you always xoxo
# 1 Jul at 10:11 pm
Hi Anita. Aria is doing so well and it’s great to see the progress particularly in the past weeks. Being short of air isn’t fun and makes you really tired even as an adult! Lets hope Aria’s lungs get stronger quickly and learn to make the most of normal air supply as soon as possible. Whizzing around the halls on that snazzy walker would be great. Thinking of you all. Sarah xx
# 1 Jul at 10:14 pm
I guess those little lungs aren’t used to such hard work. I think of the well known phrase: “And it came to pass”. This stage has come and it too will pass. Love you lots and praying constantly for you all. xxxxx
# 1 Jul at 10:17 pm
hi, i too watch for better and better news everyday!LOL its just nothing short of miracles and the power of prayer that has taken over aria and her healing. it sounds like she is doing fabulous. maybe these days of her having to work harder will become easier and easier for her as her lungs get stronger and “relearn” how hard they have to work to breathe for her. u have done such an amazing job being so strong for aria..because as u know our children know when we’re upset and when u have a child working so hard to get better as aria is working..you and hamish have to be a “rock solid” strength for her to hold onto. again, i cannot even put into words what a strong and amazing job u two are doing on arias long road to recovery!
# 1 Jul at 10:24 pm
I hear you and I understand watching your child struggle to breathe while begging the team to ‘do something’. Follow your own instincts always. I know this is taking a huge toll on you all but you are doing an amazing job as parents of a sick child (and a well child). Your own strength is what keeps your children going too so it is a burden on you, all hugs to you for keeping one foot in front of the other. Can I just say that yes, you have had to numb yourself for ‘procedures’ to keep yourself sane, I understand and am there myself still, but in every other way you are a mother who truly feels for her child(ren). Don’t beat yourself up or feel worse for being able to ‘switch off’. By doing this you are giving Aria yourself for all her treatments, unlike other parents who have to leave their child to the docs/nurses to deal with. Believe me you are the one who has the true faith in their ability and their child. (I’m sorry if this offends anyone but it takes a truly selfless parent to fully go through every thing with their child). Anyway, hugs to you, always.
# 1 Jul at 10:31 pm
Oh!!!, reading this made me feel sad,poor Aria,and poor you too!.prayers always.Things will get better in Gods time.xxxxxxx
# 1 Jul at 10:52 pm
Hi
I too am one of those stalker(supporters) who look for news each day. She is truely a real battler with a great spirit. Love to you all. Stay strong.
# 1 Jul at 11:05 pm
Is there any chance she could go on CPAP instead to give her a rest at times?
# 1 Jul at 11:14 pm
You’re an inspiration Anita – you and Hamish rock as parents
# 1 Jul at 11:33 pm
Hi there, I am a long time reader and I just wanted to say that I never cried when my babies got that test either! Nor did I cry when they were born, even though if I watch other babies being born on the TV I always cry! Very weird. It does not mean that you love your children any less than the mum’s that cry.
# 2 Jul at 12:58 am
Aria has improved so much. Maybe everyone expects too much from her. Slowly slowly little one. I think you are a marvellous mother and being just who you need to be at this stage. Kia Kaha!
# 2 Jul at 1:04 am
Im a long time reader who eagerly awaits progress reports. Having been in a similiar place to you, I know how you feel. Its normal to ‘steel’ yourself and not get emotional when the procedures happen. Keep strong, you know Aria best of anyone. Praying for strength for you both as parents to your darlings. xx
# 2 Jul at 1:07 am
praying for Aria and wisdom to the hospital staff
# 2 Jul at 2:20 am
I think you are so brave as parents to put up with everything that Aria has to go through as well as medical staff that won’t listen to you when you know Aria needs some different treatment than they are giving her. Keep strong and trust the Lord to make it right. Praying as always for you all,
Judy.
# 2 Jul at 3:41 am
Much love to you my friend – Aria is amazing what she has endured, but God gave her you to be her mother because you are the most amazing person she needs…and you’re doing so great amidst the harsh realities that are mixed through your life… you’re inspiring. X
# 2 Jul at 5:47 am
Dear Anita,
I don’t believe you have become hardened to seeing what Aria has to go through, You are being strong for her. If you cried every time something unpleasant, or painful was done to Aria, you would upset her, and that would make her feel worse. You are putting on a brave face for the two of you, bless you.
You are walking a path that most of us will not have to tread, I can only try and sympathise, as I’ve not been there, not do I fully understand. I thank God that He is there with you every step of this way that you are on. In my own strength I could not do it. I have great admiration for you and Hamish, Aria and Asher.
I lift you all in prayer and love each time I read your diary, and thank God once again that you are so open and so willing to let us in to your lives.
I wish that I lived somewhere near the hospital and then I could pop in and see you, and encourage you in person …… BUT I live in England!
God bless you all as only He can.
God bless all those who are conected in even the smallest way with Aria and her recovery …… even the cleaners in the hospital.
You are an amazing ‘outreach’ to all who come into contact with you, your love of God shines through.
With love and prayers
Eve
xxxx
# 2 Jul at 5:48 am
Peace be with you always Anita and Hamish. God has brought you this far dear bro and sis and all is well with your souls amen.
We love you both and we pray for understanding staff to listen to you in God’s right timing. It sounds to me like an athlete in training….see how far they can stretch out each day…and it hurts. We are there with you as you honestly give your feelings we thank you for sharing your joyous time and hurtful times. It is such a journey when loved ones are involved, so praise God for all that you are going through and only He knows all of your needs and know how to meet them all. Papa thank you for lifting up these two and their beautiful children in your comforting arms amen
# 2 Jul at 6:26 am
I hurt just reading aboubt your day. Parents who truly love their children just naturally hurt when they hurt. Jesus too hurts when we his children do but he knows what has to be in the long run so perhaps this bad day for Aria was part of her healing process and we will just continue to pray
Stay strong all of you and remember there are lots of love and prayers being sent your way.
# 2 Jul at 8:20 am
SO sorry to hear about her day!!!! (and I totally get the heel prick and numbness) I’m sorry. We are praying her lungs get stronger very very soon!
# 2 Jul at 2:41 pm
I’m sorry that Aria had a not-so-good day. She is doing extremely well though, & so are you! Your family is amazingly brave! God Bless!
# 6 Oct at 7:09 pm
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