Month: August 2017
Today, I picked up a very excited Zac. He had been awarded a Distinction in the National Geography Competition!
Zac is very intelligent, but struggles at school. A lot of this has to do with brain fog from his ME/CFS, but he also has a processing issue that makes doing tests and exams hard as he will know the answer but often can’t write it down in time.
He was very proud of himself, no one in his school got higher than a distinction, and he was also given some lollies for his efforts (that seemed to be more exciting than just the award!).
It’s also exciting as it wasn’t that long ago when he wasn’t able to attend school much at all and the thought of him being able to participate in a competition like this, let alone getting a distinction, was a vague idea somewhere in the future at a far off date when he was well again.
Congratulations Zac, this is a wonderful achievement and well deserved.
After nearly a week, the ketamine infusion was turned off this morning. Nat’s been quite disappointed that he didn’t have any hallucinations while on the infusion other than seeing weird patterns on the first day!
Now we wait. From chatting with other parents of kids with CRPS, it can take 7 to 10 days to notice a change in the pain levels, so we wait and see how he responds.
We are looking forward to living ‘unplugged’ as having the pole with us wherever we go was challenging. I think Nat is looking forward to getting his appetite back too.
The next step includes intensive physio with one to two sessions every day, and working hard to get Nat back onto his feet again, as well as working to reduce the sensitivity that is still in his feet and legs.
We know there is still a long way to go, but we have hope that things will start to work and his pain will be more manageable. We are realistic that he probably won’t be pain free by the time he leaves hospital, but we are hoping for a reduction in the pain level.
Nat is still hooked up to the ketamine infusion, but today the pain team called in the physio team! As well as Charlene, the physio Nat has been working with for a while, there was also Jess, a physio student, and Dave, a physio who works with the pain team and does a lot with CRPS.
Part of starting physio before the ketamine infusion has ended is to make the most of the infusion and start getting things moving again. One of the aims of physio is to retrain Nat’s brain so it doesn’t keep thinking there is an injury in his legs when there isn’t one.
Most of the “exercises” right now involved rubbing cream into his legs, starting above the pain and slowly working down, along with using a Recognise Foot app and some simple exercises to start getting his limbs working again.
Nat did go to the gym, though I wasn’t there as I had to go to work for a few hours, and get Zac to school, and be ready for hired equipment from his last hospital stay to be picked up, and get back to the hospital by lunchtime!
Giving timing, I ended up ringing the school to say that Zac wouldn’t be coming in as it was all going to be too hard with everything else. Having Zac at home made life a lot simpler as he was there when the delivery guy came to pick up the equipment and I was able to get some work done!
The plan at this stage is to stop the ketamine tomorrow and start with intense physio. The team are also going to call in a neurologist to make sure they haven’t missed anything…
Over the last week, Nat has been visited by numerous doctors. This afternoon, he had a visit from a very special doctor, Doctor Reuben!
Nat’s six year old cousin came to visit with his doctor’s bag. He checked Nat’s heart rate and then gave him an injection. Thankfully, he didn’t try and put a bandage on Nat’s sore legs!
He had a wonderful bedside manner, and I think he had a lot of fun playing doctor on a patient in a real hospital.
Reuben and his brother Wesley also played a board game with Nat, then 11 month old Lewis had a lovely time trying to steal Nat’s glasses!
It’s visits like this that help to break up the monotony of being in hospital, and they also help to distract Nat from the pain, for just a little while.
In the midst of everything we are going through, I had to do a post about the nurses here in the Monash Children’s Hospital. To say they are amazing is an understatement.
Last night, when Nat was in huge amounts of pain, the nurses on duty did everything they could to give him some relief. At no point did they make us feel like we were overreacting, or that I was just being a pushy mother. They greeted us with a smile and put us at ease.
There is a little girl in the room next to us who doesn’t like taking her medication. Every time it’s given to her there is a tantrum. We can hear the nurses looking after her with a steady calmness and patience that I’m not sure I could manage in the same situation.
Many of the nurses remember us from Nat’s last hospital stay (we are in the same ward) and happily chat to Nat about his cubing, even mixing up cubes for him to solve while they are doing his regular obs.
All the nurses we have met have been friendly and put us at ease, making our stay here a little more comfortable than it might have been. They have all been happy to answer our questions and, if they don’t know the answers, have been able to find out for us.
The nurses here are amazing and I’m so glad that they are here looking after us, and especially looking after Nat.