Well, it was Jake's biannual visit to Bloorview Kids Rehab today
I know I have talked about this before, but its something I have always been good at. Turning a negative thing into a positive one. Jake's diagnosis really sucks and he is going to have to deal with a lot of tough issues but I think it will make him a stronger person. I know this whole situation has turned me into a much better person (and way less shy and sweet I tell ya). Those who know me, know that my favourite expression is "what doesn't kill you makes you strong". I really truly have come to belive that since Jakes birth on September 11, 2001 -- hell of a birthday eh.
One of these positive things is all the extrordinary people from various medical communities that we have met because of Jake. One of our favourites has been Dr. Biggar at Bloorview. Unfortunately for us, Dr Biggar is slowly retiring, and he wasn't at the Bloorview clinic today. We missed him, but his replacement Dr Church seems to be another exceptional person. She really made Jake feel comfortable today about talking about some of his bowel and bladder issues. She was also really patient with all of our questions and just very down to earth. Also a shout out to nurse Julia too -- she always explains things without medical jargon -- trust me a very good skill to have.
Today was the appointment that we knew would have to come someday. Now that Jake is no longer constipated all the time (Sorry for those easily grossed out, time for you to leave) it is time for him to start a bowel and bladder program so that he no longer has to wear pull ups. I will try not to go into much detail because hey who really wants to talk about these sorts of things, if you dont have too. I just want people to know of some of the issues that people with spina bifida have to deal with.
The first step to get Jake out of his pull ups is to start by measuring out how much pee he has each day before we start him on his new medication. Yup boys and girls he has to sit on the toilet with a bedpan underneath that measures out in ml how much he pees. I than have to chart how much he pees each time he sits on the potty for 2 days. After the 2 days are over we have to start giving him Ditropan(sp). Than once again we have to measure out how much he pees each day and chart that as well. If he cannot pee within 8 hours of first taking the medication -- we will have to catheterize him. If that doesnt work and his tummy becomes distended we have to take him to emerg! Fun stuff -- definately will be having a couple of stiff drinks after the boys go to bed --hmm never done drugs before but thinking now might be the time to start -- joking btw!
I also than have to call nurse Julia after a couple of days to discuss pee and poop. Yup a 30 minute conversation about the colour and amounts of urine with some exciting dialogue about shapes and colours of bowel movements. You can see how we dont get asked to many dinner parties. Hopefully the medication will work and we wont have to get him into self catherization(Sp) routine -- I dont even want to think how stressful that would be for him.
Now I have to talk to his school because with the new medication he will have to go on a bathroom schedule where he has to go to the bathroom every 2 hours and try to get all the urine out. That should be lots of fun. They dont seem to understand that Jake has a real disability. To them he looks like every other kid and they sort of forget that he needs extra help. Anyone with a special needs child, you WILL have to learn to fight with the school boards. Extra help for these kids = extra money out of the school boards and the government. Hmmm seems I am a little bitter on this right now, hopefully by Tuesday when we have to sit down and talk about it I will be more pleasant -- cross your fingers.
I am probably leaving tons of stuff out -- but its been a long and emotionally stressful day. Also I hope this makes sense since I am writing this while sipping from a HUGE glass of wine. Please send comments on any mistakes or things that I need to clarify.
Here is some actually well written material on Bowel and Bladder issues in those with Spina Bifida.
If you need further information please contact me and I will point you in the right direction -- I am a library technician and I am damn good at helping people find what they need : )