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!

Thursday, 29 December 2011

Mystery Diagnosis

Maxwell and I were released from the hospital this morning but the diagnostic part of this mystery isn't over yet, we now need to wait for an MRI appointment and for small intestine biopsies to come back from Buffalo.
On Tuesday Maxwell had an upper GI endoscopy done which was not a nice test.... he was strapped to a board and then contrast fluid was squirted down his throat while real time xray images were taken.
At one point there appeared to be a "blockage" which was slowly forced open by making him drink a bottle of apple juice. Once back in our room the doctor came in and told us that in his opinion Maxwell has one of two things.... duodenal web or annular pancreas (see descriptions below).
An endoscopy was scheduled for the following day and the duodenal web was ruled out but the doctor did note that his colon was "twistier then most at his age".
Since the web was ruled out he is now more confident in his theory that its annular pancreas and so the MRI needs to happen to confirm this.
The doctors and nurses were amazing and remembered me from nine months ago when Nick was diagnosed. I got the distinct feeling that they pushed the investigations further then they normally would based on "all our family has been through in the last year" (a comment that I heard multiple times there).
The nurses also voted me "most self sufficient parent" because I changed our own sheets, weighed Maxwell's diapers myself, tracked his weight daily and went to the cafe for milk, juice and jello instead of calling for them. In all honesty the nurses have enough to do without me having them do things that I am more then capable of doing myself.
By the end of our stay Max would push the green button to turn on the blood pressure machine and willingly lift his shirt when he saw them reach for their stethoscope.
He was the "boyfriend" to multiple nurses and his superhero pj's were the envy of many - my boy is a charmer.
This time in the hospital (like always) has given me ample opportunity to think and prioritise and some changes have been made to my plans for the immediate future.
As much as I hate hearing it everything does happen for a reason and what is meant to be will be...... regardless of what plans I had in mind for 2012 my focus needs to be on health and inner peace  for myself and my family
Bring on Twenty Twelve.... We are ready!

Duodenal web

A duodenal web, diaphragm or intraluminal diverticulum refers to a complete or incomplete obstruction at the duodenum due to a membranous web.
Although they are frequently congenital and occur in the paediatric population, some can can present in adults and may also be acquired.
Annular pancreas

Annular pancreas is a rare condition (1 out of 12,000 to 15,000) in which the second part of the duodenum is surrounded by a ring of pancreatic tissue continuous with the head of the pancreas. This portion of the pancreas can constrict the duodenum and block or impair the flow of food to the rest of the intestines.

Monday, 26 December 2011

Its Been Quite A Month

December has been quite the month.... even aside from Christmas.
Even though things have been complicated, over scheduled and a bit crazy I am looking at everything as a blessing.
Last week Nick was officially classified as being in remission - my son beat cancer!!!
We still have to go to the clinic to monitor his weight, be cautious about germs etc for the next six months and then have all of his scans repeated every 3 months for the next couple years (and then it moves to 6 months and then annually) but knowing that there is no active cancer brewing in there is a great feeling!
My wee Maxwell has been in the hospital for a week now (but we got a pass to go home for Christmas).
He has had some gastro intestinal issues since birth but we always just thought that he had reflux as a baby and then perhaps a lactose sensitivity like his dad but these "bouts" have gotten worse as he has gotten older.
For a while there would be upwards of 8+ weeks where he would be good and then all of the sudden the poor boy would suddenly begin to explode from both ends. This would happen for a few days and then in the blink of an eye he would be fine again. We switched him from milk to soy and then cut out all dairy completely, I looked for triggers that would set off whatever attacks these were but I never figured it out. Honestly I as so caught up in Nick that perhaps I wasn't as vigilant with my Dr. Mom investigating as I should have been but recently I noticed that the time in between these flare ups was getting shorter. I called our paediatrician and made an appointment for the new year but this most recent one was more then his body could handle. He lost 3 pounds from dehydration and fell off the growth chart landing him in the hospital with the status of "failure to thrive".
We were connected with the GI Dept and they have been vigilant about running tests. They are pretty confident that he has some sort of malabsorbation issue and his body simply cant process something but what they don't know. What we do know is that he tested negative for virus, parasite, lactose intolerance, cystic fibrosis and they are pretty sure that he absorbs fat OK (but the actual test isn't in yet). We are home until tonight and then we return to the hospital for more blood work, a barium swallow and the "gold standard tests"... a endoscopy, colonoscopy and biopsy.
It has been a challenge being away from home but these tests needed to be done and so for that reason I am feeling lucky. Nick has been a great guide for Max, showing him that their "red caps" match on their IV tubes and that the daily saline flushes don't hurt.
 Hopefully in the next week or so we will have some answers......
As for me - I turned 30 on Saturday. The age that I always equated with being "old". I am instead looking at it like wine only getting better with age. With age comes experience and thus a basis for knowledge and intellect. Maybe now I wont get the "your just a baby" comment when people hear my age and I have been told more then once that "30 is the new 20"..... Boy I hope that people aren't lying to me.

Thursday, 8 December 2011

Has Anyone Seen My Christmas Spirit?

My Christmas spirit has vanished this year, or else its taking the scenic tour to reach me.
I'm almost done shopping, the carols are playing, the tree is trimmed and egg nog in festive glass jugs sit on the shelf of my fridge and yet my holiday spirit is no where to be found.
Maybe its from the lack of snow or the fact that this year has brought so much "excitement" (for lack of a better word) that Christmas has been robbed of its importance in my life.
I suppose it could be that I don't know what to do this Christmas, this is my first time taking on the role as the holiday matriarch.... its always been my Grandma, and then my Aunt Bonnie and now the torch has been passed to me so it seems.
There wont be the horse drawn sleigh ride, the same trivia question about the age of the tree along the path to the toboggan hill, the potluck in the cabin where the choice between chili or stew is always the topic of conversation. I wont have the wintry small town view from the top of the Liskeard bridge hill and mostly I will be missing some people that play a key role in my holiday celebrations.
Its time to make some new traditions, to celebrate differently to branch out and be the head elf of our house instead of being a worker elf.
I have never really enjoyed valentines day, Easter, Halloween or even until recently Thanksgiving but Christmas was a different story - go big or go home!
We celebrate huge and its always magical (despite the fact that each year I end up plagued with the holiday blues after the celebrations wrap up). 
I don't know where my spirit is but it needs to get here soon - there isn't much time left and I don't want to be on the naughty list.

Friday, 2 December 2011

We'll Just Call Him Bubble-Boy

We've been attacked! The germs have us held hostage again *sigh*
This past weekend my two aunts came to visit from up north, the last time that we were together was in the summer at my Grandpa's funeral. This was the longest time in between our visits and the boys were eager for their arrival. We decorated the tree and made plans for the nurse to come to the house as my Aunt still isn't recovered from the accident. Of all my children Max is the one that loves music and story time the best and since those are two of Aunt B's favorite things I thought for sure that the weekend would be enjoyable for him since there would be someone able to just sit, snuggle and read or sing but Max proved not to be in the mood.
My normally happy boy was a super huge crank! He cried, moped and complained the entire visit.
After my Aunts went home Max spiked a fever, and the vomiting started. Three days later the fever is still there and now its accompanied by a horrible cough and never ending runny nose. Today while grocery shopping Maxwell was given endless complements about what great manners he has and how smart he must be to be so savvy with his kleenex and knowledge to cough into his elbow at such a young age.
I smiled and agreed but secretly thought after hearing your mom yell COVER YOUR MOUTH a thousand times I think that any child would figure it out quite quickly.
This is the first year ever that there have been so many virus and illness, my guys are usually really healthy.
Its sort of a catch-22. We have to be cautious of germs, be extra vigilant with cleaning and hand washing etc and avoid exposure to known sources in order to keep Nick healthy but the more we do those things the more we are making ourselves open to infections by destroying our natural defences and in turn are then putting him in direct contact. I'm thinking that there is only one option, I'm going to have to look on Ebay for a bubble suit for Nick to wear.... yep, that seems to be the only logical option.