As someone who has spent their fair share of time at Childrens with a DD with a terrible chronic medical condition, I have learned to use my voice (respectfully and calmly) when things do not appear right.

I am forever grateful for the amazing care we have received and continue to receive but I also recognize the importance of being an advocate as we’ve had things missed on more than one occasion simply because the situation is complicated. Sometimes the RN and MD are right that there is nothing to worry about but sometimes, advocating for my child, who I know inside and out has led to avoiding further crises.

My words of advice are to remain strong respectful allies with your DD’s medical team but to advocate and voice your observations. My thoughts and prayers are with you as someone who intimately knows the sleepless nights and frank traumas of the lives experience for your family and child.

I know it's scary, but the doctors and nurses have seen a lot of cases and it may truly be completely normal.

Big big hugs op.

Keep any eye on her OP. If you notice more severe change go get the nurses.
Shift change should be happening in a few hours. Mention it again to the new nurse as if it's the first time you are bringing it up specifically telling her that your DD seems more fatigued than last night. Be as confident as you can about saying this.

Probably, it's just her healing from sepsis which can be 2 steps forward then one step back. It doesn't hurt to get her checked when the morning staff come in.

Thinking of you all.

I think in this case you can trust the doctors - it makes sense that she would be pale from all the medicine. It’s almost daybreak and I’m sure a new shift will be there soon. You can speak to the next shift of doctors and nurses about it. Praying for you guys ❤️

Thank you, I've spoken to two of them, but the doctor here can escalate, but they're prioritised elsewhere at the moment. They are reassuring me it's likely to do with the amount of medicine, but she wasn't like this last night. I shouldn't have left her as myself and DH are the ones who know exactly how she should be

Anonymous wrote:OP here - sorry, I wasn't going to put an update in, but I've had to leave her as getting incredibly anxious, as it feels like something is wrong again. She's looking paler than when I left her, and just doesn't look or seem herself. The nurse isn't listening to me as her signs are the same (and I get that), but I've come back to a poorlier daughter. But I've got a mom instinct that something isn't right. How can I challenge for a full check of her or am I panicking over nothing....

Is there a way to go about it... I'm lost, my mom and dad have gone home for the night so I've got no one to back me up until DHs parents arrive this morning.

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I’m sorry to hear this, OP! Is there another nurse on the floor you can pull in? Or maybe a family member you can call for support and advice?

More prayers heading your way right now!

OP here - sorry, I wasn't going to put an update in, but I've had to leave her as getting incredibly anxious, as it feels like something is wrong again. She's looking paler than when I left her, and just doesn't look or seem herself. The nurse isn't listening to me as her signs are the same (and I get that), but I've come back to a poorlier daughter. But I've got a mom instinct that something isn't right. How can I challenge for a full check of her or am I panicking over nothing....

Is there a way to go about it... I'm lost, my mom and dad have gone home for the night so I've got no one to back me up until DHs parents arrive this morning.

Anonymous wrote:OP here - DH driven here with an army of fluffy things having disinfected himself for 20 minutes. Crisis number 2 averted. She's incredibly tired so I hope she'll sleep the night and be a bit more with it tomorrow! I've left with my parents there and will head back around 3am, although I'm not sure I can switch my phone off and even though we're 20 minutes away I feel a world apart.

I’m a pp who had sepsis when I was about your daughter’s age. Back then, I was left totally alone in the hospital- my parents were only allowed to visit for one hour each day and no one else was allowed in. I was so lonely, and scared, too.

I say this just to tell you how wonderful it is that you and other family members can be with your daughter so much. Having been where she is now, I can tell you what a difference it makes to her to have parents and grandparents there with her. God bless your daughter and your whole family. Keeping you all in our prayers.

This thread has restored my faith in the DCUM community. I’ve never seen so much kindness and compassion in one thread. Makes me happy. I, too, am praying for your daughter OP

Praying for your daughter’s continued healing!

Sending good thoughts to you and your family.

OP here - DH driven here with an army of fluffy things having disinfected himself for 20 minutes. Crisis number 2 averted. She's incredibly tired so I hope she'll sleep the night and be a bit more with it tomorrow! I've left with my parents there and will head back around 3am, although I'm not sure I can switch my phone off and even though we're 20 minutes away I feel a world apart.

Thank you, OP, our prayers are continuing to be answered. Please get some rest as much as you can, even if it is just closing your eyes. Praying for you all.

We keep praying

Oh god we pray