Wednesday January 29th, Lyla was scheduled to have a spinal cast made (you may remember from previous post), along with the spinal cast she would also have a hip cast and botulinum toxin (botox) injections in her biceps.
Now, the whole lead up to the casting was something I had to prepare myself for, it was a big deal; Lyla was going to be plaster cast 'jacket', as such, it wouldn't be able to come off, she wouldn't be able to have a bath or shower, she would have very limited movement, she would be heavier making it harder for me to carry her with my back issues, it would uncomfortable, it would be something that could possibly hurt her, she would be upset, she would be hot, and with her respiratory issues I was expecting lots of episodes. As well as preparing myself for the procedure, I also had to prepare her therapies around the casting and botox, which was a hassle because she just received funding from NDIA for specific therapies with specific time frames, etc. For this Lyla needed intensive occupational therapy sessions to make the most from the injections, cancelling hydro-therapy (water based physio) and transferring that section of funding towards extra 1 on 1 land based physio and adding travel so her therapists could resize home seating equipment, we would have to to order new standing equipment, remeasure and order sleep posture equipment and ordering a specialised bed for her.
Early December I emailed the orthopaedic surgeon with some questions I had regarding the procedure, as well as some questions her physio had. I didn't hear anything from the surgeon, just a receptionist who told me he was on holidays. Mid January the receptionist emailed me saying another doctor had read through Lyla's notes and my email and he said "casting was a no". Obviously this was a shock, so I contacted the receptionist (after many confusing emails) and she told me, the hip casting was a no, but the spinal cast would still go ahead like planned. A miscommunication on her behalf because 'she didn't understand'. That was a relief.
Tuesday, the day before the procedure, I received a call from the rehabilitation department asking if I would like to rebook Lyla's botox because the procedure had been cancelled. I had no idea what was going on, so I was transferred to the orthopaedic department, where I was told by the receptionist that the procedure had been cancelled, and the surgeon was meant to call on Friday, but obviously hadn't.
That was too much for me; the frustration, the mental preparation, the lack of communication; I had reached my breaking point . After hours of calling asking for the surgeon to tell me what was going on, he finally called me back. He said after reading my email, in which I asked what would happen incase of an emergency and she stopped breathing requiring CPR, he decided the cast would be unsafe for Lyla. A completely understandable reason, but it made me think he has only JUST read my email, and the fact that I was only told, by another department, a day before it was scheduled was really discouraging. If it wasn't for rehabilitation calling me, would we have just shown up to the hospital the following morning?
So the plan is another GA where a mould will be taken of Lyla's spine and a brace will be made for her. The brace is removable, but not as effective as the cast, but if she tolerates the brace a cast can be tried, and then surgery down the track.
In the meantime I have contacted a lady who has worked with a orthopaedic surgeon in Sydney who specialises in infantile scoliosis. I am hoping to hear from him and hopefully be able to arrange an appointment for a second opinion, I just want to know what we're doing is the best thing for Lyla, or if he thinks there is a better option.
Jess
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