Nat is having a pain flare that started last night. He wasn’t planning to be awake to greet the New Year, but he was…
He has spent most of the last day and a half employing all the tools in his toolbox to deal with the pain.
- warm bath
- putting on shoes and socks
Basically it’s keeping on moving and doing all the things he would normally do, just at a slower pace.
It was hard to do this during the afternoon when Nat was at a friends house, but once he got home he was able to have a bath and start working through his toolbox again.
One bit of advice he got from some of his CRPS support friends was to have ice cream! There is a lack of ice cream in our house as we haven’t bought more after Christmas… He also finds that chewy lollies helps.
We didn’t have any lollies in the house either as they’d all been eaten, so I went for a late night run to the shops for some lollies for Nat.
At the moment, we will do whatever we need to so the pain will get under control so he can keep going. After only 2 hours sleep last night, we are hoping he has a better sleep tonight. I hope the lollies are helping….
This morning, we had an appointment with the Pain Specialist, and there is a lot to take in.
When the appointment was first made, I assumed that it was a follow up appointment from Nat’s recent inpatient stay. As we were looking for a car park, we received a phone call from the doctor as he was surprised to see us on his list… With the pain Nat was in, I explained that we needed to see someone or we would have ended up in emergency! The appointment was kept.
On our way into the appointment, we ran into one of Nat’s rehab doctors. She took a look at the lovely colour of Nat’s feet, and talked to the pain doctor for us!
A number of things happened in the appointment, but the biggest were a change in medication and booking in for another inpatient stay later in the month. This stay will include an intense period of rehab. To see what they’re looking at, go to StopChildhoodPain.org and watch the top two videos.
There is a lot to take in and we’re feeling a bit overwhelmed right now. The only thing we know for sure is that Nat is working really hard, doing everything he’s being told to do, and he’s still having regular flares of pain.
We are starting the new medication in the morning and will have the next few weeks to get our heads around the next stage of Nat’s treatment.
Yesterday, we had a meeting with the pain specialist. One part of the recovery for CRPS is retraining the brain so it will recognise his legs as being functional parts of his body.
We were told not to ask about Nat’s pain, and if we do, we are to give him $1! His face lit up at this idea, however the specialist said that he doesn’t know any kids who have earned more than $20!
I’m going to let the rest of my family know about this too.
I want to add that any time he’s asked “how are you?” and he answers “sore”, he needs to give us $1… I wonder if that would work.
I also wonder if it would work doing something similar for Zac whenever he answers “tired” to the same question!
Now I just have to remember not to ask Nat about his pain… even when I know things are bad. This brain training stuff is hard…
When my babies were born, I received numerous brochures that would tell me that, in order to relieve my babies pain, I could give them Panadol and/or Neurofen, and they would be better, sleep, etc. Over the years, the ads on TV have told me the same thing…
But nothing in the brochures or books will tell you how to deal with pain that is worse than childbirth!!
Right now, I am listening to my incredibly brave 15 year old madly cubing and saying “ow, ow” at regular intervals. A bit over an hour ago, his pain increased, even though he’s on a ketamine infusion and taking other pain meds. It’s so bad that he can’t put his feet on the floor, and air movement is hurting.
I feel so useless right now, there is nothing I can do to help him. He doesn’t want to be touched, so I can’t even give him a hug! I’m just here and I hope he knows that, ready to offer whatever support I can.
Thankfully we are in hospital and the nurses have called the pain team… we are waiting to hear what they say. Unfortunately, the pain seems to be getting steadily worse.
As a mum, you’re told that you’re there to fix their pain. Kiss it and make it all better. Give them something, do something.
The problem with the sort of pain that Nat is in is that no amount of kissing will make it better. We can just put our trust in the doctor’s and pain team and hope that they can help, and just be there for them.
My heart is breaking to see him in so much pain.
CRPS is really a crappy condition to have (and that is the clean version)!
One of the challenges we have is how Nat can have a bath or a shower. Our shower recess is fairly small and won’t fit a shower chair, plus, it has a fixed shower nozzle, so a bath is really the only option.
As his legs and feet are so sensitive, this poses challenges too.
Putting his feet in the bath means they turn bright red and and super-sensitive for ages after the bath. Lying in the bath and putting his feet up on the edge is less than ideal too.
When we had an OT come and visit, she suggested a bath chair and shower hose so he could sit on the chair over the bath and use the hose like a shower. We tried this, and it didn’t work too well as his feet were still in the water and that made the pain even worse…
We have come up with our own solution. Our bath has a deep end where the plug hole is, and a shallow end. He sits in the deep end and uses the shower hose and a face washer to bathe.
He still has to be very careful not to get his feet too wet and it’s a struggle to get in and out, but he manages. After the bath he was still in a lot of pain, especially where his feet weren’t fully dry, but it didn’t last quite as long as if he’d had his feet in the warm water.
Nat has also blogged about what it’s like for him in a bath. You can read his post here.