Day 3 Post-Op

Great news – Ash went up to the ward today, a day later than we thought, but we are thrilled that she is back on the ward and out of ICU.

She is tracking along nicely and is able to get out of the bed now with lots of help and do a short stand and a couple of steps, with a walker. The physios are very enthusiastic, and they come twice a day to get her going very quickly. We are really happy with the care that she is getting.

She is still on IV pain relief and supplemental oxygen but she is looking stronger everyday 😉

Onwards and upwards from here- Woo Hoo xxx

Thansk everyone- the prayer and good wishes is holding her up- literally
(That and Glenn's cooking and baking!!!!! ;) Glenn - you need to STOP! LOL 

Day 1 Post Surgery

Hi all.
Just an update on our champion. It's been pretty full on at the ICU.....that’s nights sleep for all of us didn’t really happen to honest BUT I am so happy to report that they just removed her ventilation tube successfully and she is now on Vpap only.
In four hours time she will be allowed to have a drink or an ice block and we might switch her just to oxygen which she would be more comfortable with.
Keep up the prayers please because they are working.
We are so relived to see that Ventilation tube out, and for Ash to have her voice back. There was a lot of guess work overnight, trying to figure out what she needed. It was like a workout, drawing pictures and doing what felt like charades all night! Ger n I tag-teamed it and we both got a few hours sleep.
At least now she her voice back, she can complain (not that she does), and ask for what she needs- phew.
Please God she’ll be talking her head off in another few days xxx

Afternoon Update:
Ok so they have decided to be a little bit more Conservative and keep the Vpap mask on for another 24 hours. Even though she doesn't like it, at least she can still talk, and we also think this is a good approach to make sure she doesn't go backwards. Slow n steady wins the race! Overall she is recovering nicely for someone with respiratory issues so we are all very pleased. She is just amazing.
The New Zealand surgeon just came in to see us and told us that he thought the surgery was amazing and that she will be the first of many to have this surgery in New Zealand. He thinks it was totally the right choice for Ash. He also told us that the Australian surgeon who did it with him, left last night and he did not get paid any money to do it. Gosh it makes us feel So grateful. We have asked for his contact details so that we can get in touch with him to thank him. They will show us X-ray pictures over the next couple of days so that we can see how straight they got her. It turns out that some of her spine was autofused so it was difficult but her back will straighten more with the rods as she grows.
Will be in touch again tomorrow XXX

Surgery Over - PHEW!

Ashlings surgery is done! Woo hoo.

It was a long day - Ash went to theatre at 8:30 and we didn’t get to see her til 4:30pm.

It sounds like the surgery was a success. There were no complications thank God. We had a chat with the surgeon on the phone and he was very happy with everything. We will see him tomorrow. 

Ash has been brought to the intensive Care Unit and she has a 1 on 1 nurse taking care of her here. She is still being ventilated, as was pretty much predicted- So they are going to continue to give her respiratory support, keep her drugged and pain free in ICU tonight, and then tomorrow they will change tactics a little. They say that rest is the most important thing for her now. She has not woken up yet and it looks like they want her to continue resting.

They have given us a room to sleep in so we will be close by. The care has been fantastic. 

Thank you all SO much for all your prayers.

Much love,

Us

Xxxxx

Surgery Day Tomorrow 26th Feb

Yikes the time has just flown by here at Starship- 3 weeks of Halo Traction has just passed by so quickly. I thank the Lord everyday for Ashling's can-do positive attitude, which has made this journey so doable so far. I am also so grateful for family and friends (including my yogis!), who have supported us so lovingly.

Last day of halo traction and Ashling has continued to ask for more weight as she was DETERMINED to get to the ideal weight, which was half her body weight, before the surgery (15 kilos). So sure enough, this morning we loaded on the last .5 kilo and she is now on 15 kilos of traction. She is very comfortable on it it now, still getting some pain relief for her head but generally comfortable on it. She' s a bit of a legend.

Tomorrow morning Ashling will have her Bipolar back surgery, and they will take the halo off at the end of her surgery. She is first in the morning so please say a prayer for her around 9am as she should be in theater then. The Surgeon is coming from Melbourne this afternoon and they will be all ready to go in the morning. As you may know, Ashling's type of genetic, non-idiopathic scoliosis is not treatable with conservative measures like casts, bracing, magic rods etc. Because her scoliosis is so stiff, our only options were spinal fusion (fusing the whole spine, and not growing again) or this newer surgery, which is done quite routinely instead of spinal fusion, at The Royal Children's Hospital in Melbourne. Invented in France, this surgery involves fusing the top and base of the spine and inserting 2 rods up through the middle to hold the fusions in place. These rods will lengthen/grow with the child. Even though Ash will be the first kid to have it done here, the Surgeon is very experienced in this surgery and will be assisted by our trusty surgeon here. We are confident that this is the right surgery for Ash.

I will post a blog tomorrow evening and let you know how the surgery went.

Thank you all for your continued love and support.
All the very best.
Car, Ger, Ash, Jamie and Patch XXX

The Picture Below is not Ashling - it just shows what it looks like- taken from this journal:

file:///C:/Users/c_o_s/AppData/Local/Microsoft/Windows/INetCache/Content.Outlook/3SSB1A4M/Spinal%20fusion%20France%20(002).pdf




This is X-Rays taken of Ashling's spine last week. The Pic on the right is pre-traction and the one on the left is after 2 weeks of traction. The difference is unreal, as you can see, in her neck and in her upper curve: The pics were not photocopied side by side so don't think that she has grown that much - LOL

XXX

Some VIP visitors this week

Hi Everyone,
Ash is continuing with the Traction and is doing so well.
She is now up to 10KG which is better that what the doctors expected. She is a trooper.

We anticipated the days to be long and arduous but Ash is keeping busy each day.

With school - not so much!!
Exercises - A little bit!!
Visitors. We limit the visiting to 2 visits per day because with all else that is going on it can end up a busy and tiring day.
We are grateful to everyone who does come in.

Here are a few pictures of some VIP visitors, apologies to all the other VIP guests that we didn't take pictures of!!!

Love Ger

 Padraig and Cathy

 Amy and Jamie

 Yay- Patch made it too!

Update - 8 days of halo Traction Left!

Hello everyone,

Hope you are all keeping well ;)

We are heading into our third week here at Starship and Ash is continuing to add more weights on, each day she looks a bit taller. It's quite incredible! She's now holding 11 kilos- I can hardly lift it up and down off her wheelchair as we have to remove it a few time a day for bathroom stops and food.

She has just 8 more days on traction and then she will have her back surgery next Wednesday, the 26th. Keep up the prayers pretty please.

All in all, we are getting by and our experience so far has been OK, nothing too stressful- just tiring and a bit tedious but not stressful. Thanks everyone for all the continued support, which has made this journey so much easier than it might have been. :) You have all been fantastic!!!!

Ok so here are some pictures below of Ashling...

Thanks everyone. Love Caroline X

Pic 1 Ash Sleeping, held in position by the pulley system and weights, with just enough space at the back of the halo to rest her head on the pillow. The stretching of her spine continues at night, and holds what has been achieved during the day. She cannot move her head all night long. And she's normally a side sleeper! But she's sleeping all night long!!! Praise the Lord!!

Pic 2 Ash is her wheelchair- just getting on with business as usual

Pic 3 The weights at the back of her chair. At this point she was on 9 kilos (now she's on 11).












Pic 4 Jamie- our other angel (minus the halo).

Our wonderful Kids Yoga Teacher and babysitter called round to our house with flowers and a card for Jamie saying: "Happy Saturday Jamie. Please know that just because you don't have a halo like Ashling, we all know that you are an angel too".

Made me cry!

Thanks Katherine ;)


Quick shout out to Ingemar and Dionne too for also making it like Christmas morning here at our house, also thinking of Jamie!!! 

Thank you to all my yogis (I miss you heaps) and to all our friends and family too.
You are all so kind with your thoughts, prayers and support. We REALLY appreciate it.
Lots of love XXX

A room with a view.

Hi All,

Thanks a mill for all the continued dinners, help, love, prayers and general support. Everything is going as well as could be expected. Ashling is being a total trooper, just getting on with the business of accepting more weights and shortening her day as much as possible with chocolate, visitors, netflix and a TINY bit of school work.

We were moved to a room on our own a few days ago, which has made it much easier. We were first put in a room with 4 patients, then in a room with 2 patients (one of whom was a significant snorer!) and now we have our OWN room, wand it even has a view and a little outdoor area. This means we can sit outside sometimes, which makes things a bit more normal- and the weather has really been playing its part too- just perfect.

We look out at Auckland sky tower, which is all lit up at night. The pictures don't really do it justice but it gives you an idea. We have brought in our camping shelves and fairy lights and made the room like a home away from home, as cosy as possible. Ger and I have been playing tag-team at the hospital. One of us is by Ashling's side all day and night so we haven't seen much of each other, but we know that this is all temporary.

Ashling is getting great care in the hospital. The nurses are just fantastic, going about their job with a constant smile and they really want to support Ash as much as they can. We are feeling very grateful for our experience at Starship thus far.

We have now been given a date for Ashling's back surgery- Wed 26th Feb, so about 2 more weeks of halo gravity traction and then they will remove the halo when she is having her back surgery.

Our weight lifting girl is now managing to hold 7 kilos- they are aiming for half her weight, which would be 15. But they say that they rarely manage that.

Anything from here if a bonus as far as we are concerned.

Ok, over and out for now.

Lots of love from us XXX

First couple of days with Halo Traction

Hi Everyone,
We have had a good first few days with halo traction.
It has been hard and Ash has had some pain. It mostly under control through the pain medication that she is taking routinely.
We are already adding weights to it starting with 1KG and working up to 3KG today.
She is a trooper and is being very determined despite having a sore neck from the strain.

Here are a few pictures of the setup.
She can sit in a wheelchair during the day which is rigged up with a pulley system to hold the weights and there is a similiar system in the bed for at night.
She takes it off during the day at meal time but other than that, she is tolerating it most of the day as best she can.
In the wheelchair we can go out and about the hospital which helps break up the day.

It has been a great weekend of visits from her friends and family which has been great for the distraction.

This is Ash sitting in the wheelchair with the pulley system and weights attached.

These are the weights hanging at the back of the wheelchair.

This is it rigged up.

Thanks again for the continued love and prayers. We can feel them giving us all the strength and courage that we need to get through this time. :)

Halo Surgery done- PHEW! First Hurdle Done and Dusted!!!

Ash has had her halo surgery this morning and it went really well.
Today she is just going to get used to it and get over the pain related in her head and neck.
Tomorrow they adjust and start gravity traction. This entails adding weights to a pulley system to begin stretching her spine.

She is in great form and we are very proud of her bravery and attitude.

Thanks for all the prayers, love, get well wishes, texts and emails from everyone. You are all awesome.

Ash - Back Surgery

Hi Everyone,

We are re-opening this blog after 7 years.....so we can try to keep people up to date with Ashling's up-coming surgery. This was our blog for the first years of Ashling's life and it has been dormant for quite a while now.

Ashling heads into hospital this Tuesday to prepare for Bi-Polar back surgery, aimed at helping to straighten her spine. As many of you know Ashling's scoliosis has progressed aggressively over the past 18 months. As much as we would love to, it won't be possible to keep everyone updated individually so we are going to try add updates to this blog when possible. You will be able to leave comments here too, which will be an easier way for us to stay in contact when we can, rather than by emails or texts.

We think that this blog will also help keep Ashling entertained somewhat (but visits would be great too!!!). Being the person that she is she, Ash would love to hear from you and we will endeavor to get her to add posts herself even if this is a bit "old-school" now!!!

The plan is that Ash will go into surgery on Wednesday and have a halo attached to her head, which will then be used to lengthen and stretch her spine slowly over a few weeks using a weight system. This will begin to straighten her back, as well as help make her surgery more successful.

Then Ashling is having a new spinal surgery in a few weeks (no definite date yet) which will be done by an Australian Surgeon, assisted by her spinal surgeon here at Starship, Dr John Ferguson. This is the fist time that this surgery will be done in New Zealand, which is why they are flying a surgeon over to do it. Ashling is pretty special indeed!!!

If you would like to know more about Halo Traction, this is a video that we were given the link to, in order to explain it to Ash. It is really good. But beware that this hospital in Texas specializes in this and so Ashling's equipment and therapy will not be as "Cool". But this is a good idea of its appearance and function.

Halo traction video


Thank you all for your prayers and love.
Lots of love,
Ger and Caroline