It has been a roller coaster over the past 8 weeks, when Gabi'pain started escalating. We have spent 46 days out of 51 in hospital. Gabi has had 9 admissions in just over 2 years with her pain.
Waikato Hospital could not get her pain under control, she is also at the (15 years of age mark) where in hospital 15 and up you go to adult wards and be treated like an adult instead of to the child wards. There is no in between for teenagers (a big grey area in my book!)
We were finally transferred via ambulance to Starship Hospital 16 days ago. As this is a children's hospital, they know how to speak and work with young patients and have managed to come down to Gabi's level and work with her on her pain management and mental health. They have been amazing and I see a glimpse of the daughter I used to know a couple of years ago (smiling, chatting, walking! less pain) - I have had a few tears seeing her progress, she is determined and has that fight back!
Starship have worked on Gabi's mental health, physio, pain meds, have taken her off for card games with the nurses on break / lunch times (apparently she is a card shark!), encouraged her, explained everything to her in her terms, pictures and analogies that she would understand (helped me understand too); the result of which, Gabi's daily pain has gone from 5 out of 10 to 2 out of 10 and has stayed there for 4 days now. Of course she is not doing the level of activity she was doing before admissions, however it is a good starting block to allow her to go home and build her strength, both mentally and physically for her surgical review in January.
Unfortunately, the children's hospital do not do paediatric joint replacements (the surgeon we have up here is a paediatric surgeon, but he only does adult hips. He works across Starship, Auckland Hospital and private, but his list is a minimum of 1 year which gets extended with covid restrictions). Starship's cut off age is also 15, so she is lucky that she is here now (we are blessed); therefore, the surgeon wants Gabi to have the best paediatric surgeon who is a master in joint replacement of the hips, as her operation is extremely tricky and requires great skill and is referring us back to the surgeon we had at Waikato Hospital, who now accepts that Gabi needs an op sooner rather than later and is keen to help, with the surgeon from Starship collaborating with him all the way on Gabi's surgical journey. The Starship pain team will also collaborate with Waikato pain team for her surgical journey too (this gives us great confidence that we have the best of both worlds in caring for Gabi's needs).
The surgeon at Starship has explained that, like the surgeon at Waikato, he would not have wanted to do the surgery on Gabi at 15, with her level of pain being high, and her mental health being low, as this is a huge op mentally and physically, and you will have pain after surgery; and with her hyper analgesia the pain would have going through the roof, so all the work they are doing with her in all aspects, will allow her to have the op at 15 / 16 as she will be strong in ALL areas.
We now need to keep her levels at the current and build on her strength until her surgical review in late January. We have many programmes to follow, support being put in place (pain, mental health and physio). We have applied to Northern Health Schools to assist with Gabi's schooling alongside her current high school as Gabi will not be able to return for a while and after clinical review may be able to gradually return to part time in a physical classroom setting.
We will be purchasing an adjustable bed for Gabi, as the pain team have recommended this is the best for her to get into a comfortable position (mitigating pain escalations). We still require additional funds to meet the cost of the bed alone, and also any help to cover getting her to appointments, hydrotherapy (not funded)- so any help sharing our fundraising page would be greatly appreciated (share with friends, family,social groups, community pages).
We should be picked up at 5pm by the transport agency from Starship and be back home around 7-7.30pm tonight. We cannot wait to be back home, missed the hubby, friends, the garden and our dog (Gabi has only seen her dad on Facetime since the end of September and not in the flesh!). Missed my bed too, however I will have to miss that a bit longer (as Gabi will have that until we source her new one as its more supportive than hers).
Our journey continues but hopefully a shorter road than the highway that takes 25 years! Goodbye Starship and thank you for all your top quality care whilst we have been here, we will miss our ward family (and the hospital food here is also amazing!!!)
HUGE HEARTFELT THANK YOU TO ALL THE LOVE AND SUPPORT WE ARE RECEIVING (BOTH EMOTIONALLY, PHYSICALLY AND FINANCIALLY) - MUCH LOVE TO EACH AND EVERY ONE OF YOU! XXXXX
