Bye Bye Starship- Hello Home Again!!! WOO HOO!!!

Hi Everybody.

WO HOO - I’m delighted to report that we brought Ashling home from hospital yesterday afternoon. She had managed to stay off oxygen for 24 hours and so she was allowed to go home. We are absolutely thrilled to be home and for our family to be back together. Our little Dog, Patch, has not stopped wagging her tail since we arrived. So cute. Ash is settling back into her bed in her room, although she will be spending a lot of time in our La-Z-Boy chair in the sitting room. We have a plan for her home physio for now to get Ash moving and to make sure she gets plenty of rest post-surgery. So, we are keeping things very quiet for now.

The week after next we will start doing a block of physio for six weeks and this will help Ash get back on her feet properly. We will either do this at the Wilson Centre in Takapuna or at Starship hospital.

Ash has a spinal appointment in six weeks’ time for a follow-up to check her wounds and do some x-rays. I will post pictures of these. In the meantime, this is a picture below that we got from her surgery. We can see a big difference already in her back and in her neck, which is amazing. But because she is quite sore, it is difficult for her to stand up straight so far, but that will all come soon with time. We are managing to stay on top of her pain mostly, with a rigid medicine regime and this will all lighten over the next few weeks.

We are incredibly grateful for the journey that we have had, everything pretty much going according to plan. Even though it was very hard at times, we never got too overwhelmed and felt supported throughout. We are so appreciative for all the love, prayers, gifts, dinners, baking and even the incredibly generous yogi- money collection for Ash- Honestly, I just get emotional thinking about how kind people have been and how loved we have felt. Thank you all so much. 🙏🙏🙏

Over the next few days, we will put together a post from Ashling once she’s feeling up to it. ❤️ XXX

Day 8 Post Op- Home is calling......

I'm delighted to report that Ash has turned the corner!!!! The Drs have taken her off the big drugs that were causing her so much heartache (literally!!! She has bad chest pain!) and put her onto easier medications for her little body to deal with.
Today she's back to herself and getting a bit stronger. We took her off oxygen this morning and so far today, she has been holding her own. They are continue to monitor her and if she manages to stay off oxygen for 24 hours, rumour has it- SHE"LL BE GOING HOME TOMORROW!!!!

And if she doesn't manage that- well at least we know it should be our last weekend in Starship.

PHEW- we are more than ready to go home!

Thanks everyone for sharing this journey with us :) XXXX

Day 6 Post-Op

Hi Everybody.
Our brave Ash is continuing to do okay at the hospital. The Drs have been finding it a bit difficult to get on top of her pain and she is still requiring oxygen and needed a second blood transfusion today, so it hasn’t been too easy for her.
But at the same time, she is making steps towards home every day, so to speak. Her physio consists of getting out of bed, standing, sitting in a chair for a while and doing a little bit of walking with the aid of a walker. For the last four days on the ward, each day she has progressed a little more. 👍She is still in pretty good spirits most of the time but has found these last few days harder due to pain and cabin fever we think. Her blood transfusion today started at 2pm and finished at 10:15pm so that was enough to send anyone around the twist!

Anyway, we still feel that going home is in the near future because she has less attachments every day, and we are slowly weaning her off oxygen!

Please keep up all the wonderful prayers and good wishes. I cannot tell you how much we appreciate them. Sending love to you all XXX

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