Please pray - 8 year old DD rushed to ER with sepsis.

[Anonymous]

I haven't read the details, but I will pray. I am as non religious as you can imagine and people did it when I was in a similar situation, it helps. Sending you love, light and healing.

Also - and I am so sorry to suggest this - but the "I love you, I forgive you, thank you, please forgive me" is a powerful one if you need it (our child survived but it has stuck with me through today). '
https://www.google.com/search?q=i+love+you+please+forgive+me+thank+you&oq=i+love+you+please+forgive+me+thank+you&gs_lcrp=EgZjaHJvbWUqDAgAEAAYExjjAhiABDIMCAAQABgTGOMCGIAEMgkIARAuGBMYgAQyCggCEAAYExgWGB4yCggDEAAYExgWGB4yCggEEAAYExgWGB4yCggFEAAYExgWGB4yCggGEAAYExgWGB4yCggHEAAYExgWGB4yCggIEAAYExgWGB4yCggJEAAYExgWGB7SAQg0MjI3ajBqN6gCALACAA&sourceid=chrome&ie=UTF-8#fpstate=ive&vld=cid:3aa2b899,vid:4uFrq3disP0,st:0

If you need to update others you may become overwhelmed. You or someone else can start this site and post updates.
https://www.caringbridge.org/

[Anonymous]

Keep speaking up, OP, depending on how she's doing now. Medical providers can miss things and it's worth it to advocate, respectfully, when need be. Talk to the new providers after shift change (happening right about now, most likely). Hang in there - continuing to think of you and your daughter.

[Anonymous]

OP here - I'm out of the room and can't see her at the moment, she came round about an hour ago which was great news but said her side was really hurting. She's got pain relief so was awful to hear. The nurse said she'll get the new doctor to do a more thorough check when he starts rounds. She was starting to sound breathless and was quietly crying, but that's her trying to be as brave as possible.

About 30 mins later machines started beeping, her heart rate had shot up and her oxygen had dropped. The nurse has told me the pressure and fluid in the lungs has caused a pneumothorax (I think that's the word used) they're having to insert a tube in her side. She's already still so weak I don't know how much her body can take. I'm in tears right now. I'd do anything to swap places with her so she doesn't have to suffer. DH is better and is coming back and I need him as much as she does

She's strong, she's got this.

[Anonymous]

Anonymous wrote: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.

+ 1 though my experience comes from multiple intense ICU admissions for a parent. The doctors and nurses do their best but they’re not on top of patients 24/7 like a family member can be. It isn’t like hospital TV shows. You have to repeat the pertinent history at every shift change. Ask your questions, push as needed, say “I am concerned she looks worse today than 12 hours ago and I would really appreciate it if you could keep a close eye on her today and check in more frequently than you might otherwise do.”

Praying it’s a “two steps forward one step back” thing, OP. It likely is. These things are often not neat and linear.

[Anonymous]

Praying for you sweet girl and whole family.

[Anonymous]

Praying for your girl.

[Anonymous]

Praying for complete healing for your precious daughter.

[Anonymous]

I’m also praying and sending healing thoughts.

[Anonymous]

Has OP said what hospital she's at? If not, I understand the need for privacy.
My mother was admitted to Inova Fairfax and got rapid build up of fluid in her lungs due to negligence (basically the IV drip was set to very high overnight). What makes me still upset about it was the joke the doctor made about that it could help with the underlying condition. Fluid in the lungs is no joke.

[Anonymous]

Anonymous wrote:OP here - I'm out of the room and can't see her at the moment, she came round about an hour ago which was great news but said her side was really hurting. She's got pain relief so was awful to hear. The nurse said she'll get the new doctor to do a more thorough check when he starts rounds. She was starting to sound breathless and was quietly crying, but that's her trying to be as brave as possible.

About 30 mins later machines started beeping, her heart rate had shot up and her oxygen had dropped. The nurse has told me the pressure and fluid in the lungs has caused a pneumothorax (I think that's the word used) they're having to insert a tube in her side. She's already still so weak I don't know how much her body can take. I'm in tears right now. I'd do anything to swap places with her so she doesn't have to suffer. DH is better and is coming back and I need him as much as she does

She's strong, she's got this.

OP, sending prayers that she's doing better than when you posted this. A pneumothorax (collapsed lung) is typically very treatable. Good for you for speaking up for her. I hope your DH is there and you have support. I'm thinking of you.

[Anonymous]

OP here - thankfully she's been kept awake, the treatment was really fast, it's another tube in her but I don't think as bad as she was two days ago. She's started making some sense in what she says as well, which had been a huge concern. She is in an absolute state, but for the first time since admission she's awake and not in lots of pain. She can't eat or drink yet as she still needs the mask, but has snuck a sip of water.

We just need nothing else to happen, she can get stronger but the doctors have been very honest, if she picks up another illness in the next few days it could be too much for her body to stand. Visitors are only going to be myself and DH until we get out of the ICU, although I think that has been pushed back a few days

[Anonymous]

OP - when DD had cancer as a baby, a dear family friend whose own child had gone through cancer treatment gave us some advice "You are not here to make friends."
If we had an issue with our nurse, we went to the nurse manager and asked for a change. If the room we were put in hadn't been cleaned well, we asked for the housekeeping manager. Thankfully because we were polite and fairly easy going we did not have a lot of issues but when there was one, we spoke up immediately.

[Anonymous]

Sending you big hugs, OP. I was in a similar position with my 8 yo DD a few years ago. Medical emergency and it took a while for them to figure out what was going on and fix it. Very, very scary times - and hard to watch your baby be so weak and in such pain. We ended up having an absolutely fabulous card team and medical care, but absolutely had to speak up and be adamant about our daughter’s care when things weren’t right or when the hospital wanted to make decisions out of efficiency. Everything ended up being totally fine but it was a long, scary road. Hang in there!

[Anonymous]

I’m so sorry this is happening. My cousin was a nurse and told me to always ask for the nursing supervisor if needed, and it has helped me in many cases with my mom. I’m still praying for your family.

[Anonymous]

OP, we are here for you as long as it takes for your girl to get better and get back home and this whole thing to be a distant memory.

May this be a safe space for you to crumble, if need be, so you can be there for your daughter.

May the best of doctors, nurses, and modern medicine, and your love and faith, bring healing.