Yesterday Lyla had an appointment with her neurologist, Nick Smith, at the Women's and Children's Hospital. It was a pretty standard appointment, he was really impressed with Lyla's growth and development and he was excited to see Lyla was so happy and smiley.
I mentioned some of my concerns regarding her breathing episodes and how they have started to reappear quite bad, often causing her to pass out afterwards (there was a period of time where she was having very few episodes, or if she did have one she wasn't struggling to catch her breath as much, therefore not going as blue). He thought it could possibly be due to low iron levels, which if the case makes sense because around the same time they were not as severe I was giving her extra iron. He suggested to test her iron levels and a few other bits and pieces with a blood test.
Along with that I mentioned the tachycardia spells she has (rapid heartbeat) with an episode, and when she was in PICU after her gastrostomy surgery the heart rate monitor was reaching 250 BPM! He referred us to cardiology again to have an ECG to check her heart out. I was hoping he would. He also referred us back to respiratory (happy about that too), the only time we saw respiratory was when Lyla was 7 weeks old and spent the week in PICU. I always found that strange because she obviously has respiratory problems. He will also recommend a swallow study to see where everything goes when she swallows. This was something we have had booked a couple of times, but it was always cancelled.
So I'm really happy that we're re-seeing a couple more departments, this was we will also know if the scoliosis is damaging her heart and possibly contributing to these issues.
After the appointment I had a few other errands to do at the hospital; we went to the HENS department (home enteral nutrition service) they showed me how to change Lyla's Mic-Key button, so I changed it by myself and now I have a back up one so I can do it at home next time. We picked up some medical supplies and paid a pile of outstanding invoices (whoops). I also filled out paperwork to request a copy of all her medical notes (there's A LOT of them) and put in a request for a DVD of her spinal x-rays for our upcoming orthopaedic appointment in MELBOURNE - Feb 19th!!
We're seeing Australia's #1 orthopaedic surgeon!