We've had some issues with Nick's bowel routine, mostly in August and September. We have had a number of instances with constipation, that required a number of different tricks up my sleeve, over a week or so before we got over it. So I wanted to come in and see someone. Preferably months ago...
Yesterday was the date (finally), I had been trying to track our progress, but when Nick started school they haven't been very good letting me know if he was clean. And so I've been hesitant to send him without diapers (he is also wet a majority of the time).
I thought we were only seeing urology, who deals with all of our poop stuff. But we actually saw a bit of everyone!
Ultrasounds show that the kidneys are all good.
We had a couple of issues that I wanted to discuss.
What can we do to clean him out? Really clean him out. Can we adjust the solution? What should we try?
The one option they mentioned was the MACE, but we are still not there.
I asked about the Cincinnati program, with serial x-rays and adjustments to the enema solution. I couldn't get them to accept to do something similar, but we did get an x-ray to see where we were.
And Nick was backed up. So all that we have been able to do was clear the closer part, and the problem we've been having (getting nothing and then getting constipated) is because the purpose of the enema is to clear everything, and we weren't getting there.
So we are going to increase his PEG to get everything moving, and then really clear that out.
That is the plan.
We're going to wait until we have a bit of time (Christmas break).
When I asked about what time of solution to use (currently we are just using normal saline), we were given the ok to experiment (since I have really been doing that myself anyways).
I also wanted to see what they thought about the fact that Nick is wet more often. Urology discussed increasing his ditropan. I'm hesitant to do this, because of the side effects of the ditropan. But there is a patch.
A ditropan patch that we can try
You replace it twice a week and it is more effective.
My questions is why wait? Why haven't we been using this before?
Not quite sure, but we are going to try it out now.
So we have a plan.
OK urology figured out
We got to talk with psychology. Touch base and see how we are doing. The difficulties we had with Nick when we were away, what we need to do with school and any testing if we need it.
Right now, waiting on any testing, and write the attitude from October off as a change in environment (but if it happens again, contact if we need it).
We also had the chance to see our physiotherapist. Nick's original one, the one I really trust.
And so I talked to her about our recent concerns with Nick's braces.
Our school PT wanting to keep the KAFO and even more brace, and I'm not very happy with it.
Coming out of our conversation with her (which happened just by seeing Kim in passing and spending 20 minutes with her)
She answered our questions about his feet turning in. And my question about Nick's braces.
If he can walk without the 'K' then leave it off.
If he can't walk without the 'K' then he needs it.
I was very happy with that plan.
Then we were really ready to leave.
And Dr Church, our developmental paediatrician finds us. Did we know we were supposed to be seeing her as well? Oh. Oops
Nick and Kyle were all ready to be out the door.
So we talked quickly about our plan. We have her contact information, and will contact her if needed over the holidays. And follow up at our regularly scheduled appointment.
I definitely think I will go directly to Dr Church instead of running around in circles that I feel we have been doing since we identified we needed help and had some problems in the summer.
So a quick clinic got us a plan and direction and hopefully we are moving forward!
We also had the chance to quickly catch up with another family (but only quickly)