Hope Love Cure

PEG surgery and skin biopsy

A chesty cough had the anaesthetist wondering if going ahead with surgery was the best option, after discussions with the surgeon it was decided that pipers window of opportunity may indeed be now. 

Piper was given numerous amounts of ventolin to assist airways before surgery, desaturation of oxygen levels during surgery required assistance, and during recovery Piper was again given ventolin then appeared to be quite relaxed,
the next thirty minutes told a different story, and Piper began crying quite hysterically with pain, tears were streaming down her little cheeks and almost instantly Nursing staff  had administered the first morfine  IV bolus and finally piper relaxed once more... This until her little muscles would strain from a cough or jolt from a seizure,  then once again pain relief was required to  relieve continued discomfort and pain.
It is now eight pm Pipers Surgery was eleven hours ago and still she remains unable to open her eyes for any given time without bursting into tears! Hoping tonight my tough little poppet will settle feeling much brighter by morning ❀
 
Pipers Biopsy  was taken from her upper thigh, taking each layer of skin, this sample will grow in the lab and halved, one tested, and one frozen for future use. 
 
 
the peg is so much larger than I had imagined!
 
I have placed a couple of pics in the main menu of Piper's peg, I appreciate this is not for everybody, however thought some may be as curious as I x
 
Sat: Piper finally opened her eyes around midday, still waiting for our smile although certainly much brighter, pain medication has even decreased,  still quite a bit of muck on Pipers chest and trying to cough remains a struggle, so it's up out of bed to get this little girl moving, change positions and prevent the possibility of developing pneumonia. 
Aunty Stace Mummy and Piper just returned from a walk around the ward, which Pipes seemed to enjoy :) even able to watch the children in the playground below, and watch Aunty Stace play the Ukulele and draw pictures in the play therapy room! Hmmm yes lol
Back in bed and mum has now administered my first meds through the peg! :) 
 
Pipers Gastroenterologist came this morning to view the peg and is quite happy with how the site is healing, also please to see piper's overnight temp subside and now tolerating feeds through the new tube. 
 
seizures continue and piper will again undergo an EEG to assist neurologist with any pattern that may  be evident. 
 
 So far, so good xx 
 
 
 
 

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Tanya Black | Reply 03.06.2013 01.54

Hi summer :) You, beautiful piper, your family, Stacy, all the people supporting you along this journey, are an absolute inspiration. Love and hope to all xxxx

Glenn Wallace | Reply 01.06.2013 14.58

Was very lucky to have dinner with Piper and her support crew last night. Was great to see her sittin up in her new stroller smiling and looking around.

polly | Reply 20.05.2013 17.44

You are such an amazing family Summer, and so strong. Please know that all our positive thoughts and prayers are with you, Piper and your family every day.xxx

Kylie Rogers | Reply 20.05.2013 05.28

Such a strong family unit with great friends..keep up the great work Summer, Michael and Willow. Piper your a trooper.. Sharing your courageous story is magical

Mel Woods | Reply 18.05.2013 14.51

hugs and kisses for Pipey and you and Stace too! Will be thinking of you guysso much in the coming week xoxoxo

Sum 18.05.2013 15.17

Thank you beautiful girl! Will be thinking of you also! Wish we could be there xxxx ❀

Erin Mentiplay | Reply 18.05.2013 13.22

I don't know you but read this blog regularly, can I just say your little girl is amazing!! Stay strong oxox

Summer 18.05.2013 14.07

Thank you Erin! πŸ’œThat's just so lovely of you! I can't tell you how much we appreciate you taking the time to share Pipers journey, thank you for your beautiful words and for being the beautiful person you so obviously are xx πŸ’œ

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Latest comments

22.05 | 13:21

Get Physiotherapy Equipments for instant pain relief
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07.02 | 09:55

Oh Summer, you are doing an amazing job with Pipes & all of your family. Keep at it. The same goes for you too Piper. Loads of love from over here. Rikki. Xxx

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06.02 | 05:38

Piper is one tough little cookie, I have no doubt at all that she’ll continue to grow and surprise us all. Love you Princess πŸ‘‘ Piper. πŸ’œ

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13.10 | 11:42

Love yo piper to the moon and back

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