My family is perfectly imperfect and not a day goes by without humour, tears or tantrums. Blogging is the modern version of keeping a diary so feel free to read along while I share the good the bad and the ugly aspects of being me!

Wednesday, 3 October 2012

Funk & Information

I am again today adjusting the sails but the path remains unchanged.
Yesterday was rough, I spent most of the day glued to my cell phone waiting for the cardiologist to call with the details of the previous day's video conference between MUMC and Sick Kids. This would be the call that would tell us for sure if Max needed open heart surgery or if they thought they could correct the ASD using the catheter procedure.
Finally around 4:30pm the doctor called..... do you have time to talk now or would you like me to call you tomorrow she asked.
She said that as we suspected the rims of his heart look small and they all agreed that open heart would be the best method however there was a hiccup.
All of the doctors agreed that with Max's GI problems unresolved it is too dangerous to perform surgery on his heart. The possibility of infection is too great and could cause serious complications if there is any bacteria in his body.
The surgery will have to wait. 
Dr. D was very quick to reassure me that clinically Max looks stable and doesn't appear to be at risk of heart failure. I understood their worry and putting my child at risk isn't something that I want to do either but as you know if you follow my blog we are now almost a year into the GI quest and we aren't much further ahead, if GI is what we are waiting for then we may be waiting for a very long time.
Dr. D said that she agrees with me that GI needs to get a move on and she said that she will be personally contacting them to try and motivate them into action.
I spent much of the night in a funk, I was out of ideas and I felt like I was failing as a mother.
Not only is my child always uncomfortable and ill but now he has to continue to live with a hole in his heart because both hospital departments are not wanting to be the one to go first.
Today I kept my routine as usual but while on the treadmill I found a new sense of determination.
Armed with my ipad and iphone I scrolled my contact list and left emails and voice mails for both the GI booking clerk and the nurse.
I manged to get Maxwell's January appointment with Sick Kids moved up from January to the middle of November and I got an email back from the GI nurse with some informative information.
While Maxwell's abdominal nodes are still enlarged they are not as large as they were in December and therefore lymphoma isn't something that I need to be concerned about, it is likely as we suspected an indicator of their being a bowel problem.
She also gave me some blood work results which could be pointing us in the right direction; one of the tests ordered is called ESR (Erythrocyte Sedimentation Rate), this test detects inflammation in the body. A normal range is 1-10 and Maxwell's results were 12. The other test was a common one, a white blood cell count. These cells act as the body's defense and are usually elevated when there is a problem or infection.
The normal level is 5-12 and Max's results were 11.7 
These test results combined with the enlarged nodes and GI symptoms are good indicators of something called Inflammatory Bowel Disease (the main types of IBD are Colitis and Crohn's).
From what I was told the best diagnostic tool for this is a colonoscopy and so I will be pressing for this to occur in the near future.
I wont get bent out of shape over the fact that Dr. Dummy was supposed to do this when he was doing the endoscopy. I will just consider this as another confirming sign that the move from MUMC to Sick Kids was a wise choice. 

Click here to learn about Inflammatory Bowel Disease


  1. I won't "click here" only because I know far more than I'd like to about IBD.

    Glad you're getting a move on with things and that the doctors are taking you seriously! Let's hope that the scope goes well, and that it happens fast (PS, the "cleaning out" is the worst part. I hope they have a nicer process for wee ones like Max!)

  2. So sorry for all of what you're going through.. Not much I can say except that I will pray for your son!!! ((hugs))

  3. Been down the route you are with Mac and then sick happy with sick kids then we moved to the east coast and go to by far for speed and efficiency...mac was so frustrating medicate forever and never get to the bottom of it...iwk within 1 year he had a cecostomy tube because his large bowel doesn't work...could they not have figured that out as mac after all those years constantly upping meds....grrr so happy we switched from mac gi dept to sick kids and then iwk (only because the move)...hugs to you...


  4. Thanks for sharing your story Jodie, we are making some headway with Sick Kids so hopefully we will have some answers soon.