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!

Monday, 16 July 2012

An Unexpected Issue

Its funny how sometimes in life you find answers in the strangest of places, places that you would never think would lead you in the area that it did.
We have been managing "issues" with Max since birth.... random problems that didn't seem to have any connection what so ever, we have seen pediatricians, GI, general physicians, neurologists, dietitians, ears, nose and throat and much more - yet its a simple appointment for a skin scratch test with an allergist that opens the door to issues that we didn't even know existed.
After seeing Maxwell's chest and diagnosing him with pectus carinatum and noticing that his "innocent" heart murmur was rather loud he sent him for an X-ray and ECG - we got the results of the X-ray today and it showed that Maxwell's heart is enlarged.
This likely accounts for a lot of the things that Max has experienced in his three short years. The "seizure" that he experienced as an infant possibly wasn't even a seizure at all, it could have been a cardiac arrhythmia that went unnoticed. And his growth difficulties is likely because his body burns too many calories simply functioning day to day not leaving enough to become fat and muscle.
The doctor has now ordered an ECHO and has changed our cardiology consult to urgent so we should be hearing from someone soon.
Unfortunately we have been given instructions to change how Max lives.... he was supposed to start daycare this Thursday but that cannot happen now because he isn't allowed to be outside in the heat or to be overtly physically active. He is not allowed to jump into the pool anymore (which is one of his most favourite things to do), steal sips of coke from Daddy's cup or have any medicine should he get sick. He has also again been given the label of "failure to thrive" because the likelihood is that he wont gain weight. He must now drink four cans of Pedisure each day which is rather expensive (a case will last 3 days).
I am angry that he has been poked and prodded, held down with fluid poured down his throat, been sedated multiple times, been forced to fast or eat and the list goes on and on but yet a simple X-ray could have found this long ago.... this has likely been there since before birth.
On the other hand this is another confirmation that you should always follow your mom intuition..... not very often that its wrong. I knew that something was wrong, but I have to admit that I am surprised at the direction that things have taken.


  1. Oh my dear Cass, I have such mixed emotions. On one hand I feel there is a blessing on finally having a diagnoses and having potentially averted some kind of terrible catastrophe by finally having some truth and answers. Where as on the other I am so saddened and angry that it had to be something so severe. I hate that you will have to take away things that he loves to do, that no kid should be kept from doing. I hate that is is a lifetime adjustment and that it's something that will hang over him and your family from now on. I hate that answers have brought worry and that in all of this, even the answers will not make things better.

    It drives me nuts that you will have to work so hard to keep him well and that it's going to cost so darn much.

    As always, you will be in my thoughts and prayers and I hope that in time, this new life will become the easier life and that finally things will settle enough for you to revisit the idea of growing your family by two feet as you had much desired.

    Big Hugs


  2. Ugh seriously? Can a girl not catch a frggin break all ready? Are you going to sick kids? Jaidyn's "team" was phenomenal last year. I'm hoping they find things to be "fixable" for wee Max. Thinking of you all xo

  3. We are at McMaster, they seem to be moving quickly and the doctors are all connecting personally which I am thankful of.