Equation Of Our Life

Christmas is in two sleeps and I think that I am ready! Presents are wrapped, food shopping is done and holiday meals have been planned.
The boys are amazingly excited for Christmas and I love seeing how festive they get. This year we focused on donating to the Salvation Army kettles and we selected a few children from the Christmas tree at Walmart. We donated our outgrown winter coats and also made a donation to the flooring fund at the church that runs Maxwell's preschool.
I want my children to love the feeling of GIVING more then the feeling of receiving. 
I'm actually quite pleased that I am on top of the ball because the last week has  been a bit crazy.
On Tuesday we received Nick's latest scan results and since he hasn't been in six months I will admit that I was nervous. Nick is still classified as being in remission and on December 20th he celebrated his 1st anniversary! The scans did show that the nodes in his abdomen are still large but they haven't grown. CT scans measure size and shape but they don't show active cells. Because of this in March when Nick has his next check up we will likely do another test that shows if there is anything brewing inside the nodes where the CT cant see. The oncologist is confident that things are good but just to be on the safe side its worth checking out. On Wednesday a little after 3pm I got a call from Maxwell's pre-school teacher, she let me know that he woke up from his nap complaining about "his heart hurting", they took his pulse and it was low so they gave me a call. I went to get him and he was saying that his breathing was "tricky" so I decided that a call to the doctor was in order. I wasn't surprised when they sent us to the ER.
The ER doctors pulled up Maxwells previous ECG and chest X-ray and decided to repeat the tests for comparison. The ECG showed "some changes" and the x-ray showed that while the heart was still the same size an area now looks "fuller" which likely means that there is some accumulated fluid. They decided that given the description of what happened and the changes to the tests they should do some blood work to check for heart damage. The test results came back normal so the doctor said that while we couldn't say for certain what was the cause of this "cardiac event" he was confident that there wasn't any lasting damage to Max's heart. He did say that the cause of the fluid pocket is likely that Max picked up a virus due to it being cold and flu season - especially since he goes to pre-school. We discussed Maxwell's attendance and he said that unless he has to be there because there is no other option he wouldn't recommend it. And just like that Maxwell's preschool days were over. He attended the exact same amount of time that he did last year before having to be withdrawn.
The doctor felt that Max wasn't in clinical heart failure at the moment and so this was no longer an ER issue Our instruction were to be seen in clinic by our regular cardiologist within a short amount of time and to return to the ER if there are any issues in the meantime. Maxwell will now go in the beginning of January for a repeat ECG and a check up.
For us life at times is like three steps forward and two steps back, living life like that can be frustrating at times but despite being no genius I still can calculate that with that equation we are still one step ahead - which is good enough for me! 

A Horrific Reminder

On Friday the world was again rocked as news of the Sandy Hook Elementary School massacre spread. In the end 26 lives were lost most of which were children. Hero's were created and assassinated simultaneously and the lives of millions were altered in a split second.  Images of screaming parents and weeping law enforcement will yet again be engrained in the minds of many.
For a moment I allowed myself to think of the what ifs... what if it was my child.... but I quickly let those thoughts go, they serve no purpose, they only create fear and anxiety.
Yesterday is history, tomorrow is a mystery, today is a gift that is why its called the present - no truer words have been spoken. The truth is that none of us are invincible and life can be altered or lost in the blink of an eye which is why we have to make every moment with the ones that we love count.
I am not a perfect parent (for the record I don't think that one exists) but I try everyday to let my boys know that they are the best thing that has ever happened to me. Some may say that I coddle my children and perhaps they are not wrong but I prefer to think of it as making them a priority.
I gush over horribly colored pictures, kiss and rub non-existent boo boo's, allow a fear filled child to sleep in my bed, sing you are my sunshine a thousand times a day and even listen to Disney soundtracks in my cool car lol. I ask my teenager about his friends, interests and goals and I tell him that I love him and pretend that I don't notice the eye rolling that occurs.
My husband and I end every phone call with I love you and while it may now be routine and expected I know that should God forbid something happen to either of us those three words were never left unsaid.
Tomorrow is not promised its just merely hoped for, anything can happen.... illness, accident or something more sinister but the end result remains the same.
Take the time to make each day count, say what needs to be said, if you have to stop and think about the last time that you intentionally said or did something kind and loving then its been too long.
Put in the energy to create a love that will long outlast the body, one day regardless of circumstance it will be all that is left.
There is never a doubt in my mind that those that I love know it.... they feel it, their worlds are better because of it and mine because of theirs. When I am on my death bed I am sure that I will have a lot of regrets but I guarantee that dancing around the kitchen with my boys while some Christmas cookies burned in the oven will not be one of them.

You are my sunshine, my only sunshine, 

you make me happy when skies are grey, 

you'll never know dear how much I love you, 

please dont take my sunshine away

Letter To Santa

Dear Santa;

I would like to start out this letter by saying that I think since last Christmas I have been very good, I have done my very best to tame my road rage, control my frequent eye rolling when I hear something dumb and at the very least try to mask my amusement when one of my children repeats a less then polite word that I have said. I have apologized when my husband has pulled one of my long hairs from his throat during mealtime despite wanting to tell him that his his fault for giving me "the look" whenever I mention getting that sleek short bob cut that I love on a celebrity that I cannot stand (*cough cough Jenny McCarthy*).
I have avoided the urge to drop to the ground and openly weep every time a sleepy child lets me know that they have again had "an accident" in bed and I have developed a gentle "try harder from now on" look whenever my teenager brings me dishes from his room that are furrier then our pets.
I know that I am far from perfect, there are still many things that I need to work on - I need to work on not telling rude strangers that the correct response to Thank you is You're Welcome and I need to try to stop wearing my dirty hot pink Crocs out in public (that last one is soooo hard but the fact that there is a hole in the bottom should make it easier).
Thank you for your Video Email to the boys, Maxwell now reminds me that he needs to try harder to eat as he is spitting his food back onto his plate and Kurt asks me multiple times a day what kind of sculptures your elves are able to make out of ice. Riddick likes to watch the live cam that shows your reindeer eating and rolling in the dirt at the north pole.... perhaps you could put a tab on your page that would tell parents how to explain to their children why there is no snow at the north pole.
My list this year is pretty simple, have Nick remain in remission, let Maxwell sail through his open heart surgery without any complications, continue to have Kurt and Riddick thrive in school and help me to not have a nervous breakdown come September when ALL of my children are in school full time. Its still nine months away and I already get sad about it sometimes.  Oh and a new hair straightener because my hair is a hot mess most days.
I will apologize again for you not being allowed access to our house but Kurt is afraid of you wandering around while we are sleeping, don't take it personally I'm sure that the tooth fairy and Easter bunny have mentioned that the same rule applies to them as well. As a thank you for your cooperation we will be leaving you an extra large plate of treats at my mothers house, I'm sure that you will enjoy a sampling of the calorie laden desserts that have peaked my interest while wasting too much time on Pinterest.
Thanks again for all of your magic and the warm and fuzzy feeling that you bring.... I certainly missed it last year, so far this year is much better.

Love always;
Cassandra

The Busiest Time Of The Year

November was a busy month for us and December is proving to be no different.
Last month Maxwell had his ESSB test done (also known as a small bowel follow through), this test is often done to check for Crohn's disease. This test is often hit or miss, it either shows something or it doesn't but it doesn't necessarily mean that the disease is not there, since it's non-invasive we decided to do it knowing that it could be inconclusive. Maxwell's results came back normal, the likelihood is that he does not have crohn's (yay!) but to complete the diagnostic process Max will still have the colonoscopy at some point.
Some of Maxwell's bloodwork showed the possibility of an autoimmune issue such as lupus or juvenile arthritis but thankfully a large (and difficult to obtain) blood work-up ruled that out.
One of the things that are still concerning the doctors is the fact that Max is just so slow to gain weight..... we have tried everything that the nutrition team has come up with with very little success, over the last month Maxwell has only gained 6 ounces even though we are using aggressive methods such as adding canola oil to every bottle, frying everything that can be fried and in general encouraging a diet that would cause most people to gain weight at a rapid and unhealthy speed.
The thought is that his heart needing to work harder to fuel his body simply burns more calories then he consumes. Food now plays a big part of our days and we have started to enforce periods of stillness.... story time, movie time with Daddy, lego building, electronic gaming and learning about all kinds of topics like dinosaurs - things that require the body to partially rest.
We have also decided to make the move back to MUMC from Sick Kids. While I love Dr L the travel there and back is a full day adventure which is difficult when there are special needs children at home and now with us mainly focusing on Maxwell's failure to thrive the nutrition team locally is preferred. Dr L is also sending her plan of action to Dr B (aka the arrogant arsehole) for him to continue.
Kurt and Riddick are doing FANTASTIC, we have found a medication that seems to be working for Riddick and last week every note home from school was a good one!
On December 20th it will be the one year remission anniversary for Nick, we are hoping and praying that this is an anniversary that we get to celebrate. Tomorrow is his CT scan and I will admit that I am very anxious about the results. If you remember when it came time for Nick's last scans he refused to do them so its been six months since we last knew that the cancer hadn't returned..... a long time so early post-cancer when the risk of relapse is at its highest. He still says that if the cancer has come back he wont do chemo or radiation again but at least knowing the status of his health will give him the chance to change his mind.
As you read in my last blog entry "L" had commented that she felt N was still fighting cancer then the other night I dreamt of my Grandfather and it left me emotionally shaken. In the dream he told me that he wouldn't see me again but that things would be ok, he then gave me a hug and I started to cry in the dream from a mix of sadness, fear and yet comfort despite the underlying notion that there was something wrong. I woke myself up because of my crying and needed to flip my pillow because it was so wet from tears. Whether this dream was a nocturnal visit from my Grandpa or just my anxiety getting the best of me will only be answered with the results of the CT scan.
Despite the results this is going to be a great holiday - We have made the commitment to have this Christmas be about appreciation, gratitude, love, tradition and family and less about the commercial aspect that is easy to get caught up in.
So far we are succeeding in our commitment and our children are loving the time spent looking at the Christmas lights, filling our home with the smells and sounds of the holidays, watching their PNP videos and writing letters to the jolly guy up north. The best gift that I can give my children is happy memories that will last them their lifetimes....

A Possible Future

Since my last post I have had my meeting with "L" and like before she was able to touch on things that were very accurate. She knew that I have been debating for a few months about exploring an alternative therapy but was hesitant because I was concerned about what others would think of me. The truth is that I have been thinking about Reiki for a long time and have considered getting my certification but that is something that many might consider strange given my logical and rational personality.
She said that we would be getting a sizable cheque from the government in the next few months and that we should have a nice dinner but then should set the rest aside and not spend it as we will need the money - I can only assume this is income tax in March, we do generally get a significant refund but normally use it for medical expenses, towards a new vehicle or our plan this year was to put it towards home renovations. 
She said that some find my positive "light" attitude annoying and I may notice that people are keeping their distance from me.... I am not to chase them, I am to let them go.
While here Nick came out of his room and she said "thats the boy with cancer"
(she has never met Nick) - I said yes but he is in remission now. She then asked me when his last scans were because she feels like he is still fighting.
I told her that its been almost 6 months. She told me to be prepared for the results and the fact that he is  going to refuse western medicine but will be open to a more holistic approach. She told me that this will piss off the doctors and I need to be confident enough to advocate for HIS wishes.
I never did tell her that Nick refused the last scans and didnt follow up with the bloodwork that endo requested because he wont take the medication even if something showed up or the fact that he has been very clear that if the cancer comes back he wont do treatment again.
She also said that a male over 30 will have a heart attack, it wont be severe but it will act like a wake up call and he will stop being so negative and cranky and will find a new appreciation for things.
She also said that I am opening and evolving and I've always has a special gift but I have blocked it by being rational, logical and dismissive.... these "things" are happening so that I will become accepting and stop resisting. She told me that things are still going to happen but that I am able to be in control and that once that happens things will feel normal. She said that the spirit that she feels most predominately here is a little boy (as Max has said... his "ghosty boy") and she said she feels like its our boy that hasnt been born yet. She told me to ask Max if the boy is named Marcus. After Max woke from his nap I said "is your ghosty boy named Marcus and he nodded yes, I said does he look like you and he responded nope, him look like Daddy.
I asked her when this boy would come and she said not for a while as I need to manage the upcoming issues.
All in all it was a good session and I feel like "L" is going to be a great help to me. I am trying to be not so logical and more open to possibilities and will see if anything she said proves to be accurate. If nothing else I felt much better after our session, I felt less crazy and more calm and less influenced by the possible opinions of others. Who cares what people think..... right?
                                                                                    

I'm Coo Coo For CoCo Puffs

 

**This happens whether I am stopped, driving or even just have my battery on without the car actually turned on**

As many of my real life friends and family know a couple years ago I met a wonderful woman who happens to be a psychic. We had a reading party for some fun but little did I know how accurate "L" would be. During the reading my Aunt was told that Nick would "have a rough time" and that it would be a rough year but he would be ok, little did we know that less than 3 weeks later Nick would get his Cancer diagnosis. She also said that my aunt would have surgery on both her arms, this seemed strange as she WAS planning a surgery but it wasn't on her arms... again "L" was right and during the car accident that killed my grandfather Aunt B broke both her wrists requiring surgery to repair them. "L" also said that there would be a male with a heart scare and wouldn't you know a year later Maxwell gets the diagnosis about his heart condition. I know that some of you are skeptical and that's ok, I'm not always sure about my own beliefs but I know that despite my initial just for fun approach with "L" the accuracy of her claims over time have made me more of a believer in her gifts.
I know that I am going to sound a little off my rocker but all of my life "things" have happened around me.... dreams of family who have passed away, sounds & smells and other mysterious things that many describe as "signs". I certainly don't claim to be intuitive or have any special gifts but all I know is that these random things that happen tend to freak out those around me and Dom often jokes that I need to "tell my friends to leave" when things happen around the house.
Over the last few weeks I have felt a sense of calm that I haven't felt in a long time, I simply feel at peace and happy but now suddenly these "things" have picked up and now Max seems to be involved.
While watching Treehouse the other day the toy room TV suddenly went black with the exception of a bright line, a calm female voice spoke of heavenly angels and about how God creates us in his perfect form. Maxwell was entranced in the TV, barely blinking just sitting there eyes like saucers on the TV. I quickly turned the TV off but not before snapping a picture. A moment later I turned it back on and there was Bob The Builder fixing the fire hall just as he had been only moments before.
Maxwell then began waking during the night around 4:22am and speaking about the "ghostie boy".... right now he is prime imaginary friends age so I dismissed his chatter with his new friend.
Now here is the part where I am now questioning my own sanity. I began to notice that when it was only Max and I in the car my airbag warning light would come on. After a couple days of this happening I exasperatedly said "if someone is in this car with me turn that light off right now!" and within seconds the light went off - I almost vomited right then and there!
I have asked my husband to take the car to the dealership to see if there is an electrical problem because I am starting to maybe question my own sanity especially because this only happens when I am alone in the car, it never happens with Dom has the car. Although I felt foolish I "talked to the light" again this time recording it.
I have also booked a session with "L" - I just need to put my mind at ease so that I can stop thinking that maybe I am losing my marbles. 

Lets Get Caught Up

After 72 hours of eye drops

Max feeling much better

Wow its been quite a bit since I have blogged. Its not for lack of wanting to, its honestly just been a lack of follow through. The past month has been a busy one but lots of things have been accomplished.
I started the paleo diet that I blogged about previously and have kept up my gym routine three days per week. So far I have lost twelve pounds and now have twenty five to go before getting back to my pre-pregnancy/pre-cancer/pre-craziness weight.
I will be honest and say that dieting makes me mad and moody (just as Dom), I feel deprived and angry at the world. To combat this I have had to figure out ways to allow myself the yummy stuff, on the weekends I eat what I want (which is most often pizza pizza and chicken bites) - they taste like heaven but after a week of eating clean my stomach gets mighty mad.... its all worth it though.
Right now my challenge is Halloween candy, we have it in abundance and the chocolate bars scream at me from their tiny fun sized packages purched atop my fridge. Today for lunch I had scrambled egg whites, grapes/strawberries and two peanut butter cups - it was a yummy combo.
The part of this new lifestyle that surprised me is how much I enjoy going to the gym. The trick that I use for myself is my ibooks app on my ipad. I only allow myself to read while I am on the treadmill and when I am engrossed in a good storyline the time flies by.
Some movement is happening for Maxwell too, for a few weeks he has been complaining about headaches, eye pain and light sensitivity. Like a decent mother I took him to the eye doctor who said that he was mildly far sighted (but not enough yet to require glasses) and that she saw some inflammation which could be the result of some allergy etc.... ok she's the doc and that sounded quite reasonable.
About a week after our appointment I woke to the sound of Maxwell crying about his eyes, his Dad got to him first and was quite disturbed to find Max looking the way that he did. His eyes were purple and almost swollen shut, he'd looked like he's been in a bar fight.
I made an appointment with the family doctor suspecting it to be a possible case of pink eye but that wasn't the case. The doctor suspected it to be something called Uveitis which is common in people who have Crohn's disease. We were given an urgent referral to the eye specialist and were seen within 48 hours, awesome but still problematic. Because Max had been constantly putting his hands to his eyes he had then gotten a bacterial infection which made his eyes (and I quote) "a mess" - the doctor was unable to get a really good look. He gave us strong drops to be used four times a day and instructions to make an appointment when Max starts complaining about the symptoms not when there is a visual indication of a problem.
After hearing about the connection to Crohn's, I emailed Sick Kids GI and told them about what happened and I informed her that I want something done ASAP. This child is dealing with enough without now having his vision effected too.
I was actually surprised when I received an email telling me that they had booked a test called a fluoroscopy (ESSB) which can detect GI diseases and disorders with less risk than a colonoscopy.
The travel to Sick Kids Hospital isn't ideal but I am so pleased with the care that we are getting from them, I am hopeful that we are well on our way to answers.


 To learn about Fluoroscopy (ESSB) click here

Keep Calm And Eat A Cupcake

Over the years people have asked me how I seem to cope so well emotionally with the stress and problems that life tends to toss in my direction and the answer is simple - I eat.
When I'm happy, sad, angry, bored, overwhelmed you name it I deal with it by eating. I celebrate every milestone and heartache with food and my body has paid the price over the years.
Food became my friend and I loved it... I still love it but I now understand that we have a passive aggressive relationship and I can go from feeling wonderful to resenting myself in the length of time that it takes to swallow.
What feels great in the moment quickly turns into a feeling of self loathing which results in self sabotage and binging. Not the healthiest lifestyle to lead.
I have always struggled with maintaining a healthy lifestyle, like my food choices I tend to binge with diet and exercise. I find a purpose such as pregnancy or needing to fit into a dress for a wedding and work towards it like a fiend and when that's done so are my healthy choices.
I realized the other day that I am now five pounds heavier than I was when I delivered Maxwell. That throughout Nicks illness and Maxwell's health problems I have gained close to 30 pounds over the last two years.
That realization came life a kick in the ass - its time to fix this problem.
I thought about the last time that I was at my healthiest and the answer is when I was pregnant. I ate properly and I exercised and I got enough rest.
Its time to get back to that mindset. Over the last two weeks I have been going to the gym and following the routine that my trainer gave me, I restarted my medication for poly cystic ovarian syndrome and was more conscious about my food choices. Despite my efforts the scale only showed a two pound loss, I was frustrated but focused on the fact that its still a loss. I know that to see the real results that I am hoping for I am going to again have to start following the "PCOS diet" that yields the best results for those with the syndrome according to my nutritionist. I previously lost 60 pounds on that "diet" but I didn't feel to great while following it.  I think that the biggest struggle for me is going to be learning to evaluate health based on other factors aside from numbers on the scale or on the tag in my pants.
I'm a work in progress but I am excited to get started (as excited as a girl that has to resist cupcakes can be)

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

I'll Take 1 Straight Jacket Please

Yesterday morning I took Max for his abdominal ultrasound and I left the appointment feeling a little bit crazier then when we went in.
There was a sense of deja view that left me with a knot in my stomach that I just couldn't untie over the course of the day.
Before we knew that Nick was sick he and I made many trips to the doctor and to the emergency room, symptoms were always over looked or explained away without ever thinking that there was anything sinister brewing inside his body. He was tired, thin and not gaining weight because he was athletic and played a lot of hockey, his lymph nodes were swollen because it was cold & flu season, he had stomach and back aches because he was constipated.... nobody ever said hey lets check this kid for cancer.
Yesterday I got the unnerving feeling that this was happening again, last December we discovered that the nodes in Maxwell's stomach were enlarged and since he was a baby hes had a predominant one in his neck as well. Yesterday was his follow up and wouldn't you know the nodes are still bigger then they should be and low and behold despite having daily bouts of diarrhea the ultrasound tech said that he is constipated as well.  My mind began to race..... tired, thin, slow to gain weight, general unwellness, swollen nodes, constipation..... oh gosh that knot in my stomach just got tighter.
I am hesitant though to trust my instincts because I could simply just be a paranoid mom, that is likely the answer. I have asked over the last year if Max should be monitored for lymphoma and was told that while there is a slightly greater instance of the cancer amongst siblings there was no need to check Max.
They have done blood panels and haven't said that anything was out of the normal range.... that's a good sign. They did an MRI last spring and I don't recall them saying that anything looked abnormal but then again, they missed a great big hole in his heart so should I be overly trusting of them???
Really though what is the likely hood that Max would have a Lactase deficiency, an atrial septal defect and lymphoma..... not likely at all.
I feel as though I am already boarding on the brink of no longer being taken seriously, that I am the mom who is crying wolf all the time but then on the other hand I have yet to be wrong with my suspicions.
Maybe cancer makes you overly sensitive to the disease, that's what the doctors say..... I suppose its better to error on the side of caution no matter how foolish I may appear in my request. He already sees a pediatrician, an allergist, two GI specialists, a cardiologist and now I am requesting that he be seen by an oncologist.....
I wonder if straight jackets come in pink?

I Want To Hear From You

I want to apologize to all of you who read this blog and want to comment but are unable to, I didn't realize that my settings by default would only allow those with a Google account to post.

This has now been changed and everyone is able to comment.

Sincerely;

Cassandra

A Bunch Of Zebras - UPDATE

On August 27th I blogged about the appointment that Maxwell had with our GI doctor at MUMC during which the decision was made that Max's file would be sent to Sick Kids Hospital for a second opinion.
I was told at that time not to expect to hear from anyone anytime soon because the doctor had tested for everything and there really wasn't anything that a new GI Doctor could do for us ( A Bunch Of Zebra's Blog Entry)
Imagine my surprise when twenty-three days later Sick Kids calls and wants to see Maxwell the following day!
My Mom came along since she was on vacation and together the three of us navigated the Go Bus to Toronto where we scarfed down lunch while defending ourselves from pigeons with ninja like reflexes and walked the 30 minutes to the hospital from Union Station.
Sick Kids is a great hospital but I find that it's physical appearance lacks the "comfort" that MUMC seems to have, my thought each time we have been there is that it really needs a makeover :)
After a lengthy wait we were seen by the doctor who came across as nice but very professional.
We discussed everything stemming right back to Max's conception and it actually felt like she was really listening.
The MUMC GI clinic didn't send over the complete file, only what he felt was relevant and even that wasn't the actual detailed paperwork but merely summaries of them.
The doctor excused herself to her office for a short while and came back into the room with a stack of papers, the first words out of her mouth were "I don't want you to be mad but......." - Hmm this cant be good.
Back in December during Max's hospital stay his abdominal ultrasound showed that he had enlarged lymph nodes, I remember this because I had a bit of a panic attack that another of my children had lymphoma.
They reassured me that it was not lymphoma but that was the end of the lymph node discussion. What they didn't tell me is that enlarged lymph nodes in the abdomen is often a symptom of a bowel disease and at the very least should have been followed up with a repeat ultrasound.
The doctor said that all of Maxwell's symptoms sounded like celiac but the paperwork from the MUMC GI Dr said the test was negative so she decided to look at the actual detailed report.... this is where my blood pressure began to rise.
Apparently when a biopsy is done of the intestine they are supposed to take 6-8+ samples from different areas of the tract as its not likely that all of the intestine would be damaged or inflamed. What we discovered is that when they did Maxwell's biopsy they only took two very tiny samples from areas close in proximity because the tract didn't "look" damaged.
If we look back to Max's life at that point its almost certain that looks alone would be deceiving. He was only two years old and had been breast fed for his entire first year, once solids were introduced he vomited more food then he digested.
Pretty much in a nut shell the biopsy to confirm or exclude Celiac Disease cant be considered as the test was done incorrectly.
Now because of Max's heart condition its not safe to repeat the test until the hole is repaired and he can be safely sedated.
We have a beginning plan of action which includes blood work, acid reducing medication to hopefully help with the vomiting and the burning that frequent bathroom trips can cause and we return in January for a check up.
I am tempted to pay a visit to the GI Dr at MUMC and educate him on how poorly he tested for "everything" but I wont..... I will maturely just be thankful that yet again he sent us to a doctor that caught his errors and set us on the right path.   

Tasting The World

Its now the middle of September and I think that we are adapting quite nicely to our new routine. The boys are still enjoying riding the school bus and Riddick waves fast and furiously until they are completely out of sight.
The transition for Riddick hasn't been without some hiccups and there are aspects of his special placement that I didn't think I would need to address. By the end of the first week Riddick had taken another child's juice box and informed me that he gave away his sandwich to his friend.
How is this occurring with supervision I wondered.... well the answer is, it isn't.
As I suspected there is not supervision, there are 3 adults that wander the halls during the break. It still baffles me how we could say on one hand that these children require a special classroom and constant assistance but once the bell rings and the teachers bellies are growling we can suddenly overlook the needs of these few students.
Normally I would be putting up a fuss and demanding better supervision or I might even possibly go to the school each day at lunch to supervise Riddick myself but I am resisting the urge.
Maxwell has also started pre-school and he loves it. I was worried about tears and drama but he was clearly ready and goes with no issues on his 3 scheduled days per week.
Yesterday when I went to pick him up I saw him racing like a maniac up and down the ladder and slide only to discover his heart monitor still tucked into his cubby inside his classroom.
Normally I would be marching into the supervisors office or even contemplating about whether this is a good place for him but I simply reminded his teacher that she needed to take it and use it when they went outside to play (I smiled and everything... are you proud?)
I am working on letting my children branch off and be independent of me, to give them the distance to fail or succeed without the driving mom force behind them.
To let them get a taste of the world without their mom sugarcoating it... this new method is especially true for Nick. He has hit the age where he and I are not always buddies and I don't always like his choices, my wants and desires for him are not necessarily the same that he has for himself. I've spoken to the social worker and forgetting that he is 16 and not a grown man is apparently normal. That dealing with cancer and its aftermath invokes a sense of maturity and its hard to go back to being a kid. I can understand that to a certain degree because as a teen parent I felt the same way, my birth certificate said one age but my brain and body felt something entirely different.
Raising Nick is going to take a creative approach because I need to validate his need for control and to express his ability to make choices while still being cautious that he is indeed only 16.
This is the age that I am finding parents make such individual choices where their kids are concerned. Some let them drive the new car while others completely refuse. Some let them drink in the house while for others alcohol is a complete no-no, Some encourage part time jobs while others insist that the focus be on school, Some allow forms of expression such as piercings and tattoos while others are very much against it.
I found that around 15 parenting a teenager became like an island..... there was no real "popular" method and it seem to be about survival and making it adulthood alive.  I am finding this age a little tricky because none of my peers are there yet, I am the one beating down the path without anyone leading the way and I worry all the time that I am making mistakes. I am finding that my age is very much playing a role in my parenting, my teen years (or lack there of) are very fresh in my mind and I find that I am basing many of my decisions on myself at that age.
I can only do what I think will work for me and my family and thankfully there doesn't seem to be as much judgement towards parents of teens as there is when the kids are younger... there is room to make some mistakes which is good because I promise that there will be many (and thats a hard pill for me to swallow)
I'm working on giving my kids the ability to experience life.... throw open their arms and feel the big world complete with all of the trials and tribulations that it has to offer.
I hope that I make the right choices for them but only time will tell.

A Touch Of Natural

As I sit here updating my blog I have a hot coffee within smelling distance and a smile on my face. Usually I am dissecting the positive from a negative situation but this past week has welcomed some nice positive things for Maxwell. 
After a wait of nine months a space opened up at the preschool that Maxwell attended when he got sick this past winter. I love this school, its the one that both Nick and my younger brother attended as wee ones and their teacher at the time is now the programming director. Its Christian based programming which I like.... there isn't a God pushing attitude but instead they promote virtues and morality - basically teaching with a do unto others attitude. A bonus is that although he will now be in a different classroom then he was last year he will have the same teacher and many of the same friends.
I contacted the cardiologist and got her opinion..... with some modifications in place its ok for Max to attend!
We have ordered his heart monitor, printed out the list of warning signs and precautions and now we just wait for his start date. He is very excited!
The other good thing is that Max had his ECHO at Sick Kids Hospital. Dom came with us because I was not comfortable driving in downtown Toronto and that has not changed. I could honestly feel my anxiety rising in the traffic. Cars everywhere, people running everywhere, bikes weaving in and out of traffic, constant horn blowing, people coming right up to your window asking for money and homeless people sleeping on sidewalks while others literally stepped over them as if they were spat out chewing gum.
The tech that did Maxwell's ECHO was older and clearly experienced. You could tell that this had been her field for a very long time and she had a take no shit attitude.... this test was important and it was getting done tears or no tears.
She seemed taken aback by Max's clear terror and my response of "he's been in and out of the hospital alot" only provided further confusion because she had read that this ASD was only recently discovered. I explained about all the GI stuff, the lactase deficiency and the failure to thrive and her reply surprised me. Without skipping a beat she said doesnt surprise me one bit, kids with an ASD as significant as this often have other medical issues. She explained that the heart is just overworked and the body naturally protects the important stuff like the heart, lungs, brain etc and there are just things that have to get overlooked like the digestion system and the immune system. Her matter of factness got me thinking and so I began to research.... what I was finding was confirmation of what she was saying and yet none of the medical professionals had mentioned it. I decided to contact a "health & wellness adviser" at our doctors office who promotes a more "natural" lifestyle. She explained that the gut naturally has both good and bad bacteria but they often co-exist without much problem but when there is a problem with the immune system (as there is with a heart condition) the bad bacteria can overtake the good bacteria and then things like malabsorption disorders such as anemia, lactose intolerance, irritable bowel syndrome and other issues like gas, bloating, constipation or diarrhea and a general feeling of unwellness can occur.
My inner anti-Jenny McCarthy was still on high alert, surely if this was all common then why wouldn't our GI doctor, dietitian, pediatrician or general practitioner have mentioned this..... seemed a little strange to me but regardless of my doubts I asked what she recommended.
She said to give Maxwell lactase enzymes prior to eating anything that may have come into contact with dairy because its possible that hes being exposed due to cross contamination when having take out and processed foods. She also said to start him on a probiotics twice a day.
What do I have to lose right.... The worst that would happen is nothing and we would be no further ahead so I followed her advice and something surprising happened. After a few days Max seemed to have a happier belly. The diarrhea was gone, the lime green color was gone, the bathroom urgency was gone and so were the complaints about the tummy aches. He was sleeping for longer stretches at night and was crying less in his sleep. I woke one morning so confused because I had slept for 7 straight hours and that hasn't happened in years. While I am still a bit of a doubting Thomas about many natural lifestyle claims my interest has been peeked because for the moment it seems to be working.
There are still many things that Maxwell deals with because of his heart like fatigue, body aches and moodiness (mostly due to not feeling so great) but if he even feels a tiny bit better then I am all for the natural approach.
Just don't expect me to become the next Jenny McCarthy.




Image courtesy of The Changing Buzz
http://thechangingbuzz.com/page/2/

A Bunch Of Zebras

As the mother of four boys whom all have different medical needs I have dealt with my fair share of doctors over the years.
Some are personable while others are more reserved, some have delivered good news while others have given not so great news.
We have been given hugs and reassurance from doctors and on more then one occasion we have had a doctor run from the room in tears but never in my life have I ever..... ever had a doctor that has infuriated me the way that the doctor did today.
Today was Maxwell's check up with the GI clinic about his stomach troubles, we have been seeing Dr B on an outpatient basis since Christmas when we met during Max's hospital stay.
Dr B was the doctor that sent us to see the allergist who discovered Max's heart condition.
After asking how Max was doing I told him that the stomach issues were getting worse, Max was still dealing with daily bouts of vomiting, he gets frequent stomach aches, his bowel movements are still lime green and recently on occasion its been foamy.... as if he had eaten soap and pooped it out.
Hmm..... he replied, his blood work tested negative for celiac but its been known to be wrong, it sounds a lot like celiac disease and we've been thinking that for a long time.
Yes! I said - my mom radar has been blaring in my head for months now regarding the celiac possibility.
Moments later we are talking about massive doses of antibiotics and scheduling a scope for a biopsy, this doctor has apparently forgotten that he already did one.
When I let him know that one had been done already he quickly said "oh well then it cant possibly be celiac" and dismissed the concept completely. When I asked about whether it was worth maybe trying a gluten elimination diet to see if it helped at all he said "well you're the mother......" - ugh asshat! I explained that I had read that many people can be gluten sensitive and have severe reactions but not actually have celiac disease and he simply said "thats unlikely"
We discussed that he had done "every test" and aside from the lactase deficiency and "twistier than most" intestines everything appeared fine.
Now I am frustrated and promptly pulled up a picture from my iphone displaying an up close and personal image of the contents of a Walmart toilet and asked if THAT looked normal to him.
My kid is sick.... any idiot can see that, he's not my first, he's my fourth and I know that being in pain and evacuating your insides from both ends all the time is NOT normal.... no matter what the tests say.
He then decides to listen to Maxwell's heart and informs me that he cant hear the murmur . By this point my smart mouth has surfaced and I say "and yet theres a big hole in it".
He talks about how good it is that Max has gained one pound as if its a problem solved and seemed annoyed when I said no doubt from the 5 cans of pediasure a day.
At this point he said "clearly you need some reassurance from a fresh set of eyes because I've done all the tests and everything is alright. You're obviously not convinced and I'm out of ideas so we'll make the referral to Sick Kids since you'll already be there for cardiology but dont expect to hear from them soon because I've tested for everything".
His attitude made me feel like some first time neurotic mother who is suffering from munchausen syndrome and I am not impressed. The last time that I checked GOD was not spelled d-o-c-t-o-r
I am not a doctor but I know when something is not right..... they didnt listen when I was pregnant and I almost died, they didnt listen when I knew something was wrong with Nick and he almost died, now I am being dismissed again and I have had it, being a mother doesnt make you nuts, the majority of us want our kids to be healthy and we dont like spending ages in the hospital or millions on ridiculous parking fees - there is clearly something that he is missing. I think that claiming that he tested for "everything" is stretching it - he tested for the obvious things - if history has taught me anything its that with me and my kids check for the random and there will lie the answer.
As they say.... sometimes when you hear hoof steps dont check for horses look for zebras.

Putting It All Out There

I recently got an email from a virtual friend who revealed that she is having some rough times in her life.... more then most know about because she has decided to remain private about the difficulties that were happening.
She commented about how I am so open and honest and she wanted to know if being that way was helpful as I seem to have more on my plate then most do but I am able to juggle it all.
Her question made me stop and think, why do I blog, tweet, or post status? Why am I active on "mom" forums or infertility sites.... I am not the best writer nor do I think that I am offering any intentional teachable insights so why do I do what I do?
The answer is simple - because it helps me, it calms that inner part that sometimes wants to freak the fuck out.
I've always done it, long before blogs and social media there were journals and word documents saved in hidden files on the computer, there were letters written expressing hurt, anger and sadness or love, lust, regret or embarrassment that were all promptly ripped up.
I was the girl with the garbage bin full of crumpled paper and even to this day I am never too far from my binder or iphone note pad.
As my fingers type I am not contemplating what the person reading it will think.... I am completely purging for my own personal benefit. Love it or hate it - it doesn't matter because its not about being popular, its about being grounded and present and ensuring that if in that moment I am not then I have something detailing my life to look back on.
The fact is that time changes things, I can look back now on the time when Nick was diagnosed and I can put such a positive spin on it because I know how the story goes (until now) but that isn't really the truth.
If I am being really honest though that time is a haze, the best way to describe it is like looking back on being in labor. You know that it was painful and certain parts stand out in your memory but the middle aspects are fuzzy. Putting thoughts and feelings into words allows me to rely on something more accurate then my fading memory. When I read my early entries I feel sick to my stomach, tears burn my cheeks and my fingers tremble as I scroll the pages. I can forget how it felt to be in that moment.... time dulls the emotions but sometimes reliving them can take you to a better place. One day Nick was being a real pest.... complaining about there being "no food in the house" which in teenager talk means nothing that couldn't be cooked in the blink of an eye. He complained about this and that and my patience was dwindling, reading my blog brought me back to a place of appreciation. I was able to hear his bitching and appreciate that I still have him with me to do it.
I was able to take a step back and see that despite my ears being dangerously close to bleeding from all of the bitching, we were in such a good place compared to where we had been not that long before.
I think that so many people have such blessings in their lives and they ignore them or cant see them because they are so focused on the things that seem like curses. I see the bad for what it is, make a plan to deal with it and move on as if it were normal. Allowing the bad to rent space within me means that there isn't room for the good and that will only create someone who is bitter and angry all the time.
Being open and honest with my writing allows me to be authentic with the world and with myself. What you read is what you would see in real life. Sometimes my life is shitty, sometimes its wonderful and most often its a mix of the in between but its mine and I need to live it the best way that I can. For me that means occasionally being able to look back and read my thoughts as if I were a stranger.... the good the bad and the ugly.
To come to terms with the fact that sometimes to appreciate how beautiful the light is you have to remember the feelings that came with the darkness. And if my inner most thoughts shared with the world happen to effect someone reading them well then I am just that much more blessed as a person.
Its just who I am.........................

Bottles & Opinions

Many nights long after the kids are asleep I will sneak into their rooms and look at them, this is a way that my heart (and nerves) can forgive the foolishness of the day. It allows me to again see my boys as innocent gifts from God instead of leeches sent to suck me dry of all my patience (ok maybe that is stretching it a bit lol)
They all have their own little idiosyncrasies and  it makes them unique..... Nick always mutes his TV, its on but with no sound and somehow the sheets are always pulled from the corners of the mattress, Riddick is never in his bed.... he may be on the floor or in his chair but rarely is he in his bed, Kurt gets lost in his blankets... rolling like a cocoon and encasing himself is his method of comfort and Maxwell is still on the bottle - yep I said it.... My son is three and still takes a bottle. Are you offended? Are you judging me? Are my parenting skills less then you thought ten seconds ago?
I love watching Maxwell sleep, his eyes closed in peace and his tongue curled around the nipple quivering as he drifts further and further into dreamland.... if he asks I will also let him have a bottle during the day.
Somehow though this action is considered wrong as he is "too old", at least this is the wisdom that a complete stranger decided to impart on me while shopping at the mall recently.
I didn't feel like explaining that his bottle was full of pedisure in hopes of helping him gain weight nor did I feel like confessing that I would feel like a total shit for taking away a sense of comfort and security after he's had two years of poking and prodding and enough scary things that at 3 he already shows signs of anxiety. I didn't think that she would understand that I felt that so much of his life is out of his control that if plastic and rubber makes him feel like he is in charge of something then who am I to take that away.
I simply said "thanks for your opinion" and we walked away with Maxwell's bottle hanging from his mouth like an elephant trunk..... sweet and expensive strawberry pediasure dripping down his chin.
The bigger issue for me then this woman's personal thoughts about my parenting skills was why she felt the need to impart them on me.... why do mothers do that to each other in the first place?
Why do so many feel that their methods are the only right ones and everyone else's is wrong?
Being a mother is a hard gig, the hardest in the world and while there are different ways of becoming a mother the end result is all the same, its a 24/7 job where your boss is the most demanding person on the face of the earth and messing up can cause unrepairable damage. You're your own worst critic and sometimes receiving flack from other woman who have walked in your shoes or still are wearing them can make you feel the need to evaluate your own sanity. I'm not perfect, there are times where I see a mom and her kids in the store and I think "oh lord she is totally in over her head" but in all reality she likely knows that and doesn't need me vocally expressing it. Its possible that her kids have just come from a birthday party and are working off their sugar high or they have just come from a weekend visit with their dad and they are now subconsciously giving their now single mom a run for her money.... maybe she likes having her kids act more rambunctious then others - regardless of the reason I don't see how I have the right to say "you should control your kids" or any of the other rude things that I have heard escape the lips of one mother towards another.
How different would the world be if woman in general were supportive and encouraging of each other - something to maybe strive for in the future.
As for me..... people can be judgemental all they like, like a duck and water it rolls right off my back. Maybe the next time a woman voices her opinions to me I will loudly Quack at her - QUACK QUACK QUACK - I'd be more than glad to hear her thoughts about that!

Detailed Cardiology Meeting

Today was the day that I have been having mixed emotions about, I was scheduled to meet with the cardiologist to get the detailed results of Maxwell's echo. The thought of this was both reassuring and nauseating and it reminded me a lot of the feelings that I had while waiting to speak with the doctors about Nick. I was eager to know what we were dealing with but nervous that it would be something really bad.
After crazy traffic and construction I was thankful to find a parking spot quickly (which is why I always try to book my appointments before visiting hours start).
After some pleasantries with the receptionist she informed me that I didn't have an appointment and I must be mistaken. I assured her that I did have a 9am with Dr D and she needed to figure out how to see me pronto if a mix up had occurred. She called back to the nurse and mumbled something that I couldn't hear and then said "apparently you know more then I do around here"
I was seated in a room and within moments the doctor and a bunch of students entered.
This doctor is great and was dressed in jeans and a floral shirt with with her sunglasses still on top of her head, she comes across as human and approachable and doesn't appear to have the I am God complex that many doctors seem to possess.
Clinically what Maxwell has is called Large Secundum Atrial Septal Defect with mild pulmonary valve insufficiency and significant right ventricular volume overload - What an f'n mouthful!
Pretty much he has a big hole in the wall that separates the left and right sides of his heart and because of this blood is able to free flow throughout his heart instead of following the one-way paths that it should take.... this excess blood is what has made his heart enlarged and the non-oxygenated (blue) blood mixing with the oxygen rich (red) blood is what makes his lips, fingernails and around his eyes have a bluish tinge at times.
This alone shouldn't account for his vomiting but they said that its possible that his enlarged heart is pressing on his other organs and so when food/fluid gets in his stomach or if his bowel/bladder is full it could be too much in his little frame and so his body vomits to make room.
There are two ways to perform the surgery that he will need, one is done via catheter and the other is to open his chest wall and perform open heart surgery.
The catheter method can only be done if there is a safe amount of "rim" for the closure to connect too, if the rim is too small then the closure can slip and reopen which could lead to heart failure. In Maxwell's case the bottom rim seems to be sufficient but his top rim is small. The doctor said that if she was doing the surgery she would likely do it via opening his chest but cardiac surgeries are not done at McMaster they are done at Sick Kids in Toronto and so they will make the decision after further examination.
The next step is for us to go to Sick Kids where they will do their own Echo, then Sick Kids and McMaster will video conference and map out a plan of care. They ideally want Maxwell to "be bigger" in size as he is only in the 5% for weight but since this is a struggle they may decide to proceed regardless.
All in all surgery can take place anytime from six months to two years from now depending on scheduling and other variables but Max will be followed closely by the cardiology team and I should "rest assured" that he is in very good hands and he will be monitored by the best both before surgery and after.
We are going to try and continue without the use of diuretics because they can cause weight fluctuations and he will likely be receiving the RSV shot this flu season.
He can do physical activities in very short amounts but must stop if his heart races, he feels dizzy or vomits or if his breathing becomes labored.... a good estimation is about 10 minutes.
The bad part is that we will likely have to cancel our trip up north for Thanksgiving - its quite far from a pediatric hospital should there be a problem and not really worth the risk.
Now we wait for the call from Sick Kids.... waiting waiting and more waiting. 

Photo Love

There are many things that I love about my boys but the one thing that I love the most is that they all seem to share my enjoyment of photography (well.... maybe not the teenager but teens are odd creatures)
I wanted to share with you some of the pictures that I have taken recently with the help of my "assistants"

Echo And Some Answers

On Thursday Max and I headed to the hospital, we were going to attempt his un-sedated echo.
We were armed with a new Spiderman book, a ton of suckers and some gummy fruit flavored snacks. We got there early enough that I could walk the halls with him in hopes of boring him off to sleep. His eyelids fluttered and flickered getting heavier and heavier with each of my footsteps and soon enough he was out like a light.
I momentarily felt pretty proud of myself for taming the wild animal into submission. A few moments later the tech called us into a child friendly room where the flat screen TV was set to Treehouse TV. I laid Max down on the bed and the tech turned off the lights and got to work, I thought that it would now be a piece of cake and that maybe I would steal his candy as a reward for being completely awesome but my sinister plot was quickly ruined because the moment that the gel connected with Max's chest his eyes jolted open and he was less than impressed.
After a few moments of tears he was able to settle but only if I was talking, the moment that I would stop talking he would burst into tears again.
It took about 45 minutes and while I thought that after seeing so many of Nick's echo's I may be able to see something I quickly learnt that I am not as medically inclined as I thought I was.
When it was all over the nurse told me that the doctor didn't work on Thursdays but they were left specific instructions to call her when Max's appointment was over and that she would review the scan and call me the following day with the results.
Friday seemed to drag on and on as I waited for the phone to ring. Finally by 3pm I couldn't take it anymore and called only to discover that the mailbox was full. The next logical thing for any sane parent to do is to get in the van and drive to the hospital prepared to sit in the waiting room until the doctor could personally speak to me.
On the drive down I told myself that if there was a problem the doctor surely would have called me in the morning instead of leaving it until the end of the day.
The receptionist was great and let me know that the doctor actually had our phone call "booked" into her time slots and she would not forget to call so I headed back home. I had barely driven five minutes when the doctor called and I had to pull over.
She said that "something showed up on Maxwell's echo and it couldn't be treated with medication" She said that  he would need to be followed at the hospital. I was momentarily relieved thinking that if medication wasn't needed then clearly it was nothing serious. She then went on to tell me that the booking clerk would be calling me to arrange for me to come back in and discuss things in detail as its "easier to explain with diagrams" that was that.... that was all she was going to tell me. Nope this would not suffice and so I asked for more detail, I couldn't just accept "something" as a diagnosis I needed more. She then went on to tell me that Maxwell has "Mitral Septal Defect" - in layman's terms a hole in his heart. She then told me that he would need surgery to repair it but often times its able to be done via catheter instead of needing to open the chest. She then said that she will be consulting with Sick Kids Hospital (I am not sure why since MUMC is a fantastic hospital with a great cardiology dept).
I am flustered and feeling that sense of mistrust in the medical system boiling deep in the pit of my stomach. Given that this happens during the early weeks of fetal development its now clear that the first ultrasound tech that saw "something" with Maxwell's heart during my scan was indeed right and instead of being sent for a fetal echo (as I now know is the correct protocol) I was simply scheduled to come back in for a second look. I also now know that the murmur that was heard during Maxwell's first hospital stay which was classified as "innocent" actually wasn't and this could have been fixed a long time ago before it became so problematic and resulted in him being so fearful.
I wish that I could say that the hole in his heart was the end of the medical issues but sadly when all of his symptoms are considered together it still leads to questions of a possible syndrome being the underlying culprit and so we still need to see a geneticist, this I was told could take up to 18 months - clearly this is not going to be a quick process but at least we have some answers and can take action. Baby steps in the right direction!

Maxwell Sees The Cardiologist

Today Maxwell had his appointment with the cardiologist, Dom took the day off to come with us which was a nice treat as that never happens.
Upon registering we were given the paperwork and told to head upstairs for a repeat ECG, my husband being a newbie to the medical appointments didn't realize that they are done on a first come first serve basis and after overhearing another family being given the same instructions I scooped up Max and made a b-line for the elevators.... I think that I impressed Dom with my "competitive" streak (as he called it).
The ECG went as I expected with Maxwell screaming so loudly that Dom claims people in the waiting room were wondering what was being done to the child. He screamed at the tech "don't touch my body" and wailed to be "left alone". Maxwell only calmed down when I told a random tale about the "Adventures Of Julius Cat" (my creativity dazzled the techs LOL)
We then returned to the cardiology department and met with the nurse, she asked questions about family history of Muscular Dystrophy or MS and then was impressed with my pre-printed family history of heart issues.
Since McMaster is a teaching hospital we met with a resident who took a listen to Maxwell and then they all went to meet with the doctor and go over all the information.
I was a little nervous because I had researched the doctor that we were seeing and was impressed with his rating and his patient reviews, our allergist/pediatrician knows him personally and spoke highly of him but I found out that Dr M was NOT who we were going to be seeing, that they booked Max in for the first available appointment and it didn't happen to fall within Dr M's schedule.
When the doctor came in she was very pleasant, took the time to chat with Max about the animals on the wall and let him warm up to her before she made the move to check him out physically... well played Dr... Well Played.
She said that Maxwell's heart indeed appears abnormal and he will require an echo which they are hoping to get done this week.
She said that she is expecting to find something on the echo but she isn't sure what that will be. She did talk about Mitral Stenosis (heart valves being too tight) as being a possibility, if that's what it turns out to be the treatment can range from watch and see to surgery depending on the severity. She also agrees that Max needs to see Genetics for a workup as a "syndrome" is still a possibility.
Given that a quick ECG was difficult and very scary for Max an hour long echo is going to be pure hell.
I have been given the ok to give him some gravol to make him a little sleepy and we will be bringing a movie and some suckers and hopefully we will get some good images otherwise we need to rebook for a sedation slot which means an anesthesia consult first which will slow the whole process down.
He's too young to understand whats going on but he's old enough to know that he doesn't like it. We don't even get parked before he is proclaiming his reluctance to go and his dislike for the hospital loud and clear.
So far each department has had stickers, candies and a basic knowledge of Spiderman.... Thankfully Max is easy to impress :)

ECG Results

Each Sunday our family sits down and enjoys a tummy busting dinner and this past Sunday was no different except our desert was interrupted with a phone call from the allergist/pediatrician - yep you heard that right, a doctor called me from his home on a Sunday evening.
My heart leaped in my throat but he was just calling to check in on Maxwell, make sure that he hadn't had any cardiac problems and to see if I had heard anything about the ECG results, which at that point I hadn't.
I waited until Tuesday and then called the cardiology dept to enquire about the results, I was told that they weren't planning on sending the results to any of the other physicians until after our appointment because they didn't want "wires crossed" but that the pediatrician can personally call if he is concerned.
Tuesday evening my phone rings again and its the pediatrician, he requested the results and instead of being given the actual results he was faxed a hand written note from the cardiologist.... not exactly what we wanted but better then what we'd had.
We knew that the results would be abnormal, you can listen to Maxwell and know that something isn't right so the results were not unexpected.
The ECG showed that Maxwell has something called Right Bundle Branch Block which means that the right ventricle of his heart isn't receiving the full electrical impulse and therefore isn't contracting simultaneously with the left ventricle the way that a normal functioning heart does.
This alone isn't the diagnosis but its instead another symptom, some people live with RBBB never knowing they have it or having any problems but given that Maxwell also has Cardiomegaly (enlarged heart) its more likely an indication of an underlying heart condition.
We are being followed very closely by an awesome team of doctors who have partnered together to make sure that Max stays safe. We see the pediatrician on Monday and then the following week we go to cardiology, our wait for an appointment was a short one given the medical norm's in Ontario and even so we are squeezing in check ups - It may have taken 3 years and a fresh set of eyes to look outside the box where Max's health is concerned but I cant complain about our medical team, they are stepping up to the plate in a big way, they are monitoring closely, checking in on a personal level and are not trying to sugar coat things for me which as a parent frequently involved with the medical system I appreciate. The doctor allows me to be fearful, ask questions, and reassures me that Max is in good hands.... no matter the results, he is quick to point out "good" things like Max being developmentally appropriate and that so far there haven't been any spontaneous cardiac issues.
A great doctor can make all the difference even when things are not looking fantastic! 

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.