Quick Update – PH Clinic and fall

Well another day (and unfortunately a night) spent at the Mater Children's Hospital.  The Pulmonary Hypertension Clinic was on today, and I feel good about finally seeing his first Cardiologist back in the 'Charles in Charge' seat!  

Last night was spent in the ED after Julian slipped while hanging on to the top bunk at Mum & Dad's last night and banging his back and neck on the metal bed frame . . . arrrggghhhh!  Xrays came back with a shadow on his spine however the CT Scan was all clear.  It seems that his spine was jolted out of alignment for a while.  He'll be sore for the next few days, that's for sure!   

All we can say is, "Phew!"

Good people = Good results

As I mentioned in my previous post (Just when you start to relax), we got a call from Julian’s high school last week and were told by the Year 8 co-ordinator that his teachers’ had expressed their concern about how constantly tired he  is in class.  The outcome from that was the dropping of two of his subjects, which starts this week - half days on Tuesday afternoons and Wednesday mornings.  

Last Thursday came with another good result, with the Physiotherapist attached the Pulmonary Hypertension clinic, and the school/community physio attached to the hospital both coming up to Julian’s high school to do a review and help both us and the school work out a ‘program’ I guess, to safely get Julian out of his wheelchair at school more and more until – fingers crossed – it will only be at school for the inevitable so-so health day.  This meeting came about after my ‘Stand your ground’ post, which spoke about how Nigel and I were pushed to have Julian out of his wheelchair at school, despite no one from the clinic ever having actually attending his school to see how viable that was.  We had had no support, nor advice on what we should be doing or how this should happen, and the end result was that Julian’s health started to decline almost immediately, and we made an ‘executive decision’ along with support and advice from his GP to have him back in his wheelchair again until someone could assess the school.  

Well, both physios were in agreement when it came to the size of the school.  One actually used the word ‘sprawling’!  After a walk of one of Julian’s busiest school days and a very long meeting (thank you so much to the Year 8 co-ordinator for her patience during this time!), we established a plan to – slowly – get Julian out of wheelchair at school, and unlike the demands from the clinic, the physios have put together a plan to gradually ease him out of such a high need to use it.  We’ll be starting with one of his half days, where he has just one double-period, walking next to his wheelchair while one of his mates pushes it up to the eating areas and back again.  The physio will be presenting her suggestions at the next clinic (next week) to have it approved by his cardiologist before it’s implemented at the school.

Keep your fingers crossed they agree to this and don’t try to push it further!

Just when you start to relax

Well, this is going to be a little different to the blog post I had originally planned.  I’ll just have to get to that one later! 

One thing I really hate about Julian’s condition is the complete feeling of dread I feel whenever the phone rings and the phone number listed is his school.  You know, that “Oh, shit” feeling you get?  Without realising it, you’ve pulled your shoulders back, braced yourself and taken a deep breath before you have even picked up the phone.  I can still feel the knots in my shoulders from this latest call from Julian’s high school this morning . . .

Julian’s high school is great.  The Principal is fantastic and the Year 8 Co-ordinator is unbelievable.  It’s so nice to feel safe when you wave your kids off to school, knowing that the people whose care you are leaving them in are completely trustworthy and that even the students care deeply about the well-being of others.  The teacher’s at Julian’s school are extremely switched on and genuinely enjoy the company of their students.  This brings me back to my tight shoulders.  During the staff meeting this morning, each and every one of Julian’s teachers raised their concerns of how tired he looks.  Every single day, in each and every class.  So, we received a phone call from the Year 8 Co-ordinator and we put our heads together (so to speak) to come up with a plan to make Julian’s school year a bit easier on him.

After looking over his time-table, Nigel and I have agreed to let him drop 2 subjects – Home Economics (we’re big in the kitchen in our house, with the kids always getting involved in cooking and baking, so it’s no huge loss there) and Japanese (while we’d love for him to learn a language, it’s not a necessity in his life).  This will give him an afternoon in the school library to catch up on homework, do assignments and study, one afternoon off school and a morning off, which we both agree will help him out immensely.  We’re starting it as a trial from tomorrow and we’ll see how it goes over the next few weeks.

Now, if only we can get his sleep sorted out . . .