Struggles
Gosh today was one of those day were you just want to yell THIS LIFE IS SO HARD!
Aria has been really thirsty for almost 10 days now.  Like really thirsty.  There is nothing else on her mind but water- she won’t do anything else.  Sometimes we have moments of peace and can distract her, like with skyping yesterday.  Some days she is sleepy and it isn’t so bad.
Since she got her trach she has been throwing up. Â Not sure why but the water she drinks is coming straight back up. Â So the team have asked us not to give her anything but ice chips and sponges of water.
Ummmmmm- tui billboard anyone!?
Translation for our American friends YEAH RIGHT
So for the pass four or five days we have been doing battle with Aria, fighting with her as she begs for water.
For those of you out there reading this that are parents- can you imagine your child begging you for water for hours on end and having to deny them. Â It is like torture. Â I love my daughter so much I would do ANYTHING for her, that same love can’t deny her something so basic, yet I must. Â A very big burden to bear.
So today I had had enough. Â Aria can not suffer like this and we can not watch her suffer. Â Thankfully our nurse today was understanding and listen to me as I explained where we are at. Â Now Aria has a trach she is off sedation so she can be awake more. Â But what is the point of her being awake if she can’t do anything but ask for water and be distressed. Â So we are at the point of just wanting her sedated if they can’t solve the thirst issue. Â Why can’t they solve it!? Â Why can’t they just fix her?!
Honestly I just wanted to cry and cry.  Our nurse said ‘you guys are in such a hard position’  She got it.  The Intensive Care Doc came in and we spoke and while there was no solution as least I felt like he listen and understood and he was honest with me.  There is no solution right now- sedating her isn’t the best thing for Aria long term and the reason for the vomiting is a little murky.  He did talk with me and said ‘right I am not leaving the room until you are happy with the answers I have given you’  I felt really good about him saying that- giving me the freedom to be honest and totally thrash out the issues.
Honesty is such a key part of this journey. Â I love it when Doc’s tell how it is. Â Hard to hear- sure- but at least we know where we are. Â Some more investigation is needed into her thirst, the Doc who spoke with me has some ideas. Â It is likely to be two or three issues.
Please pray for Aria as she struggles, please pray for us as we advocate for her, please pray for the new team tomorrow morning, please pray for rounds tomorrow- lots to discuss.
23 Responses to “Struggles”
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# 25 Apr at 5:09 pm
Sounds like a hard place to be, i’m glad the dr took time to listen to your concerns and I really hope Aria’s thirst eases and you get some answers for vomiting (hopefully fixable answers too)!!
You guys are awesome hang in there!! xx
# 25 Apr at 6:38 pm
Thankful the Dr took time to listen, praying they will get some answers and do all they can to resolve the problems, Praying for the team tomorrow that they too will listen to your concerns and investigate to get answers. Prays and hugs for you all
# 25 Apr at 7:00 pm
Best wishes for find an answer quick smart. Lots of love and hugs.
# 25 Apr at 7:05 pm
Always always praying for ALL of you, hang in there.
# 25 Apr at 7:13 pm
Another bump but you will make it. Stay strong and remember all of us out here are praying for all of these problems to be solved quickly and back to the good days. Your frustrations are normal and God will also take care of them. He will give you strength and peace is my prayer tonight.May Aria have a good night also.Love to all of you.
# 25 Apr at 7:14 pm
Oh that sounds so hard. I am glad you struck a doctor and nurse who took you seriously and wanted to really hear you. Take care
# 25 Apr at 7:33 pm
So sorry that you have to endure so much… no words can explain the way we and so many feel for you and your family. As a mom/grandma I cannot imigane not being able to give my child a drink. Just remember that our God is bigger than all of this and that He loves you so so much. He cares about every detail, even Aria’s thirst. Thanks for being so open and honest. It helps us to know how to pray for you. Love you guys. Doc and Sharon
# 25 Apr at 7:37 pm
Prayers for you guys. I can’t even imagine what it would be like to be in your position, to have my children pleading with me, how hard on a parent’s heart (and mind). 🙁 Glad to hear that someone took the time to listen and discuss it with you and I hope and wish and pray it means the problem will be resolved sooner rather than later.
# 25 Apr at 7:53 pm
Oh sweetie, I so get it. Denying her something simple like water must be harder than anything else you are going through (almost!)It’s like an extra kick to your heart isn’t it. I really feel for you, It’s like you have to deny Aria a lot right now and it should be the big things not the essentials like water. Sending you a big bear hug, you can cry on my shoulder. Much worse than starving for any operation. What a great doc and nurse you had today – it makes so much difference when you are listened to and respected as a human being in hospital instead of part of the furniture, I really wish for you to get some answers and solutions during rounds. xxx
# 25 Apr at 7:56 pm
Anita,
We struggle with the thirst issue with Austin a lot and it just sucks! It is so hard to have to tell your baby “no” for such a basic need. We found Austin needs a lot more IV fluid than might be expected to keep him from getting so miserable with his thirst, but I know Aria is in a more complex state right now. Praying they find the solution fast!
# 25 Apr at 8:16 pm
Anita, What a hard time you are having, and as a parent I can understand how horrible to have to deny something like water for your child. I’m glad the doc took time to talk to you. Here’s hoping that they can find an answer to Aria’s thirst and a solution to her throwing up. My thoughs are with you.
# 25 Apr at 9:28 pm
I’m sorry to hear that Aria is struggling so much, & that you were having a hard time as well! 🙁 I hope the doctor gave some answers that were helpful! I don’t know how you feel, but I am praying for your family! May God continue to watch over you, give you strength, peace, comfort, hope, joy, love, & may He bless you!
# 25 Apr at 9:58 pm
When I read about how your little girl has struggled all this week I just want to cry, I do hope that you get some answers from her new team and I presume that they are monitoring her blood sugar levels etc, anyway good luck for tomorrow.
# 25 Apr at 10:49 pm
I am praying that this horrible issue is sorted out – and that you get some answers to this problem and that it is sorted pronto – Much support to you guys Hugs
# 25 Apr at 11:00 pm
Wow you guys are going thru just so much it is almost unbelievable.
Sometimes medical staff can be just so flammin casual & you have to pump them for info.
Hope they have tested for the most obvious of adequate hydration & diabetes.
Hang in there, surely things can only improve.
# 25 Apr at 11:00 pm
hope you get this issue sussed
bless the doctor
praying
# 25 Apr at 11:13 pm
So, so hard for you both. We hurt for you.
But you know what? EVEN THIS Jesus understands and carried on the cross. Remember how He said “I thirst”? He understands and suffers with you. EVEN THIS.
# 25 Apr at 11:38 pm
Oh so hard for you all, and awful for Aria…. So glad you were able to be honest and get honest open answers…. hoping and praying they can get to the bottom of this. X
# 26 Apr at 1:27 am
I really feel your pain having to deny your child. I pray that the medical team tomorrow will have some ideas on how to fix this thirst. Someone mentioned testing for Diabetes, but I am hoping the doctors will have tested for that automatically as it seems to us (non medical people) the most obvious thing to check first. Praying for all the things you asked us to pray for.
Yours in Christ,
Judy.
# 26 Apr at 1:39 am
How is Aria’s sodium levels? – this certainly gets affected with having an ileostomy – but I’m sure they have covered that sort of thing. I love the reminder that Jesus himself knew what it was to be thirsty and He also says to come unto Him all who are thirsty. Praying that even Aria can be given a sense of peace and confidence in Jesus who loves you all so dearly.
# 26 Apr at 2:42 am
Oh gosh guys. I can’t even imagine how hard that would be.
I hope the docs can come up with a solution to Aria’s thirst/throwing up issue very soon.
# 26 Apr at 7:41 am
Oh Anita….I do know how hard it is to watch your child suffer and not be able to do anything to help. To me, it’s one of the hardest things a parent is called to do. We are praying for answers, praying for peace, praying for “good days,” praying for more smiles, and praying for total HEALING!!!! I love you!
# 26 Apr at 8:25 am
praying for you and that precious girl.