Anonymous wrote:OP here thank you for the support again, coming back on to read all these messages is so emotional and heart warming.

I think we're getting there. We've had the chest drain removed. There's a little concern about the fact the weaning of oxygen hasn't been successful. She still needs a face mask to get enough air in so can't start eating yet. It's been a good night though where she's rested and has been quite awake this morning. I'm realistic to expect a few issues still as her body has been hit hard. But the sepsis has been stopped and we're dealing with the damage it has done, hopefully it is all temporary her organs seen to be okay, beyond it hitting her heart and lungs from the effort. The doctors are more cautious, reminding me she's still fragile and will need constant monitoring in the icu likely through the weekend.

I've been reflecting on what I could do differently. I left her suffering and gave her medicine the night before we went in. Please if your little one is sick listen to your mom instinct. I knew it was more than a fever but I didn't act. If I'd have taken her earlier she likely wouldn't have gone through this. I've nearly lost my daughter because of my lack of action. It's terrifying and I've so much to make up to her for all the fighting she's done

Anonymous wrote:

Anonymous wrote:When my daughter was first admitted to the hospital with the initial crisis associated with her serious chronic illness (prior to diagnosis), she was in a life-threatening situation.

I am a nurse and did not recognize what was going on—and I am a seasoned medical professional.

I share this because I struggled with similar thoughts of guilt and what-ifs. The truth of the matter is you love your daughter deeply and are there at her side. You are in it for the long haul and will see her through this. You got her to the right place and she is in the expert hands of the he folks at CNMC.

Be patient and forgiving with yourself! I’m pulling for your family and praying.

Thank you so much for this message. It must be horrible as a nurse. I think I've not known how bad some of her numbers are, if I'd have known how sick she was a couple of days ago I'd have been worse than I am.

I think the guilt feelings will go, DH wanted her in earlier but hasn't blamed me. The feeling of being a bit useless is the other emotion I'm battling. She's having to fight all this and all I can do is hold her hand etc through it

Anonymous wrote:

+1 OP it's so hard not to do this to yourself and look to yourself for blame. I went thru this for a different medical situation where I waited a day to go to the ER and then felt like I "caused" all the hardship my little one went through. But you are a great mom for detecting this, being there for your daughter through it, and holding it together yourself. We are all cheering you and DD on. Glad to hear the updates and hope things keep progressing even if it's slow and steady.

Anonymous wrote:

Anonymous wrote:OP here thank you for the support again, coming back on to read all these messages is so emotional and heart warming.

I think we're getting there. We've had the chest drain removed. There's a little concern about the fact the weaning of oxygen hasn't been successful. She still needs a face mask to get enough air in so can't start eating yet. It's been a good night though where she's rested and has been quite awake this morning. I'm realistic to expect a few issues still as her body has been hit hard. But the sepsis has been stopped and we're dealing with the damage it has done, hopefully it is all temporary her organs seen to be okay, beyond it hitting her heart and lungs from the effort. The doctors are more cautious, reminding me she's still fragile and will need constant monitoring in the icu likely through the weekend.

I've been reflecting on what I could do differently. I left her suffering and gave her medicine the night before we went in. Please if your little one is sick listen to your mom instinct. I knew it was more than a fever but I didn't act. If I'd have taken her earlier she likely wouldn't have gone through this. I've nearly lost my daughter because of my lack of action. It's terrifying and I've so much to make up to her for all the fighting she's done

NP who has been following this thread - absolutely not, ma'am. No, no, no. You called 911 when you noticed a rash and got her to the hospital immediately - I wouldn't have even recognized that as a sepsis tell and probably would have tried to call a nurse line or go to urgent care or even give her Benadryl or something. You've done everything right, and the only thing you need to make up is lost time with your family unit over the holidays. Please do not blame yourself and get some rest. You're an amazing mother who *saved her daughter's life* with her quick reaction, and don't let even the mean voice in your head (we've all got it) tell you otherwise.