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 :)