So, as mentioned we're waiting for a date from Starship Hospital, but I couldn't just sit, wait and do nothing.
So yesterday (7th June) Skye & I flew to Auckland to finally meet Dr Philip Insull in person. Philip was so kind and informative when we were looking at VBT options close to home late last year, and it was an absolute pleasure to meet him yesterday.
John Ferguson also reaches out to him in specific cases, thus I thought it best to meet in person rather than Philip having to just rely on X-rays. He was very thorough in his examination and again thought Skye was a great candidate for VBT, however, he does not take on younger patients due to his facilities not having specific paediatric after care but he can assist other surgeons when required.
His comments around Skye were (in Mum speak :-)):
- VBT would still be an option
- A single tether from T4/5 to T11/L1
- Multiple large incisions (6 cm) every second rib to enable them to 'get in' rather than just through cameras
- Chest drain essential
- Bolster exercises prior to surgery imperative to keep curves flexible
- Estimation that the thoracic curve after VBT would be around 30 degrees (down from 68.5)
- Currently Skye is 163cm tall. His mature height estimate is 176 cm. So heaps more growth to come.
- Risser 0.
- Discussed rib hump options and disc releasing.
So, the result of this consultation was, firstly to understand that even if we wanted to, Philip could not take us on, that John would still be the lead surgeon at Starship :-) and Philip could assist if required.
Feeling amazingly happy that someone has poked, prodded and examined Skye in absolute detail to assess that she is still a candidate for a rope spine (VBT).
We jumped into the taxi on our way back to the airport, I checked my emails only to find the email from Janet Ceccone (Dr Betz's nurse). Her email stated that even though John & Randall had spoken, Randall would not be able to come to New Zealand within the next few months (3+).
Reading this email and meeting with Philip meant that we will wait for John Ferguson and Randall Betz to schedule a time - fingers crossed before Christmas.
We are so happy that we went to see Philip Insull and have a very clear understanding that waiting for John & Randall is the very best option available to us.