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THR Hip replacement at 12

Hi all, thank you for all the messages, Brynn loved your card and kept replaying it @zauberflöte , she is in the ICU still 3 days after her surgery, she has replied to a few messages but is still really under the weather with her lungs and stomach so when she is feeling up for it I will let her type a few messages.
Warm hugs to you and Brynn @Jemma
I hope all is going well and that Brynn is resting comfortably, with pain well managed.
Hopefully you are getting the rest you need also.
Best wishes for a peaceful weekend for you both.
Hey Jemma-- so glad Brynn has you! I've put up another card for Brynn (and there are loads more where this comes from!)
You can view your card here

I know you need sleep and rest; I hope you can get some of one or the other tucked in here and there!
@GrannyC we call it "NoVa" now and I'm not sure we consider it part of Virginia :loll: But I forgive you!

@Jemma checking in on Brynn, sending a prayer for healing for her and rest for both of you!
Hi @Jemma
Sending love, best wishes and hugs for both you and Brynn.
I hope the little sweetie is resting well and getting stronger each day.
Prayers for a week of peace, comfort and healing.
Hi Brynn, sending you lots of love, warm hugs and wishes for a great week! Feel better, sweetie! @Jemma
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I just wanted to stop by to say "hi" and I hope all is going smoothly with you and Brynn. :loveshwr:
Hi Brynn :hi:
Hope you're having a good day :flwrysmile:
Thinking of you. Sending lots of love :roseshwr: and a warm hug :friends:
Hi Brynn,
I hope you are feeling better.
Sending you Hugs for You and Your Mom.:angel:
Hi @Jemma
I hope Brynn is comfortable and improving.
Thinking of her often and sending love, hugs and healing wishes your way!
I'm just stopping by to say "hi." @Jemma, I keep both you and Brynn in my prayers and I'm sending positive healing thoughts your way today. :roseshwr: :happyfeet: :puppysmooze: :catbutterfly:
Hi @Jemma
Wondering how sweet Brynn is doing? I hope she's progressing as expected.
Hopefully you're holding up well. I'd imagine it's stressful and you're very tired.
Prayers you both have a peaceful, relaxing weekend!
Dear all, sorry that I have not replied in a while. We have recently been on a bit of a rollercoaster. Brynn has been diagnosed with Mast Cell Activation syndrome, POTS and Elhers Danlos Syndrome type III. She has always had bad joints but we always thought this was because she was so thin. Her stomach emptying has gone from 20% in 4 hours to 60% in 4 which is amazing and she is now able to middle on the edge of some chocolate or toast. She decreased from 30kg to 23 at one point even with the PEG and she just looked so ill and her arms were literally sticks. She is now 28kg now so near her original weight which is still very low. We are trying to pack as many calories in her a day as we can. She is on a continuous feed of 70ml an hour as well has daily saline drips, fluids and meds. She has has a port put in too.

Her hip is okay and on the mend though, although her right hip and knee are in danger of a total replacement as well. We have recently got her a wheelchair for every day use as her joints have taken a turn for the worse. She was released from Great Ormond Street Hospital 11 days after her replacement, which we all thought was incredible for her.

But after 9 days we were back in GOSH on the Psychiatric Intensive Care Unit (PICU) because she contracted a virus but because of her CF she took a turn for the worse. We spent 8 days in intensive care and then she was released onto a main ward. We are still currently in the hospital because she is still very ill and we are learning to manage daily life and all her symptoms including dislocations, anaphylaxis and chronic pain.

We have as a family and with Brynn decided to home school as going to school in the near future does not seem likely, but we will keep her hopes up.

We may be in the hospital on Christmas but we are all hoping to get Brynn out and have a great Christmas. As she still believes in Santa. She was getting very worried that Santa would not find her, but we reassured her he would! :)

Again sorry for the lengthy wait but thanks for all the replies and Brynn loves reading the replies thanks all!

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