Wednesday, 30 January 2013
I am exhausted! Today was mighty long but it was wonderful.
Thanks to the Children's Wish Foundation Nick was presented with the opportunity to have some fun and do something nice for himself after a couple of rough years.
I remember back to his birthday right after his diagnosis when he changed his mind about getting the shoes that he wanted because the only place that he would be frequenting was the hospital - it broke my heart, but today the boy is sporting some fresh kicks and he's got more then just one pair.
Today he took a shopping trip to Mapleview Centre in Burlington and it was a great day.
The staff were beyond friendly especially AnnaLisa at Foot Locker, Hannah at Turtle Jacks and Cody at Lids. The mall smelled of popcorn from Kernels and its almost like the music was a soundtrack specifically for Nick (which it obviously wasn't lol) - I think in almost every store that we went to Classified's new song "Inner Ninja" was playing which I thought was quite fitting as it's reminded me of Nick since I first heard it.
We were treated to lunch at Turtle Jacks and it was great to see Nick smiling and eating and so relaxed, its been a long time and it really warmed my heart.
One of the things that Nick likes from that restaurant is Deep Fried Pickles (which are actually very tasty)
Being a team player today Dom even had one (close your mouth I know its shocking) anyone that knows Dom in real life knows that he's no foodie and his meal of choice is (say it with me now) a bacon cheeseburger and fries - I was glad that he tried it, tried something that Nick likes, the start of some commonalities.
We shopped for hours and Nick now has more clothes then the Kardashian sisters combined and he isn't done yet. There will be more shopping in his future as even with financial freedom he looked for the best bargains (except for in Swarovski.... he takes after his Mama lol)
I'll admit it there was a moment over lunch, a fleeting moment where I was sad. I was sad that my child had to experience so much to have this day. That not that long ago we were buying hats to cover a bald head instead of buying them for style. The moment passed quickly and the retail therapy was back underway, I think that today I saw Nick smile more then I have in the last 2 years combined.
Mission accomplished Children's wish and Mapleview... Mission accomplished!
Click here to hear "Inner Ninja" (with lyrics written) - Its not a song meant for beating cancer but it certainly makes me think of Nick when I hear it!
Sunday, 20 January 2013
My house is quiet today, Nick is at his Nanny's house, Kurt is having a visit with his birth mom, Riddick is playing with lego and Maxwell is swimming in the tub. The smell of Butter Pecan cake is wafting through my house and my stomach rumbles every time I inhale.
Its been a crazy couple weeks to say the least so I am enjoying the slow pace that this weekend has brought. Our chaos started two weeks ago, it seemed like Max had never ending appointments. One of our appointments happened to be with Rheumatology. I debated for days prior about cancelling, I thought whats the point, we ran the autoimmune blood work and it came back fine, this is a huge waste of time.
I reconsidered and decided to just go, and I am glad that we did.
Dr Tanya was wonderful and was so child friendly (imagine that in a children's hospital!) - she sang and played games and made the physical exam/assessment fun. She was also familiar with Max's medical history and had looked at his previous blood work results. As it turns out this appointment was going to be a giant leap in the right direction. During her assessment she noted that Max has inflammation in five of his joints, both elbows, both ankles and the pointer finger on his left hand. She also pointed out that similar to his chest abnormality he also has bony abnormalities of his knees which seems to be painful for him (In 3.5 years I have never noticed that). We were sent off for x-rays and more blood work and in the end he was diagnosed with Polyarticular Rheumatoid Factor Negative Juvenile Arthritis. He was started on anti-inflammatories and we will be seen back in clinic in six weeks to discuss the x-rays and how much we should adjust his medication. This diagnosis explains a lot of Max's symptoms, often times kids with JRA are anemic and have eye inflammation and stomach/bowel problems.
Because of that the doctors were all in agreement that we should move ahead with the colonoscopy.
I was forewarned that that prep for the colonoscopy would be the worst part but thankfully Maxwell breezed through it and it was mostly like any other day.
The morning of the scope we arrived at the hospital and checked in and our fantastic nurse got all of our registration stuff done. When it was time the doctor came out and explained the risks and I had Dom sign the consent forms because I was holding Max. Dom was quite uneasy with this, the risks are low but he was quick to remind me that our kids always seem to fall into the percentage with complications.
We were both able to go into the room with Maxwell which is unusual and we got to snuggle him while he fought the cookie scented gas that lulled him off to sleep. We were told it would take about 20 minutes and so we took a bathroom break and grabbed some coffee before heading into the waiting room. Twenty minutes turned into and hour and I was hoping that Dom wasn't watching the time. When the doctor came out we were called into the small consultation room to chat. She started the conversation with initially things looked normal, but that's when the conversation took a turn. She followed up her statement with but once we rounded the last curve of the colon we found a large bleed, we backed out and noticed that his colon was looking pretty inflamed. She then let us know that they had sent Max for x-rays to check for punctures, and blood work to check his hemoglobin because he may need a blood transfusion. He would be admitted to the hospital while they got things under control. Once in recovery we were told some basic things about the procedure, that Max's colon has lots of nodes but they aren't concerned because his stomach and neck have enlarged nodes too which can be attributed to the JRA.
They also said that they didn't take many biopsy samples because he was already bleeding so its likely that our results (if any) will be limited.
Thankfully we only required one nights stay at the hospital and Max was able to avoid any transfusions so all in all things were scary but worked out alright.
The confusion for me/us stems from the different doctors having different opinions on what happened. The doctor that did the colonoscopy was a colleague of our GI doctor (whom you all know I don't like lol) - she was very shaken and actually said words like "more blood then I've ever seen", We were also closely followed in recovery by many different doctors who quickly swarmed every time Max passed gas to make sure that he wasn't hemorrhaging and refused to take him off NPO status and allow him to eat just in case he needed to go back to the OR.
After a few hours our GI doctor came downstairs, he as per usual was quick to dismiss what happened as anything problematic and said that the bleeding was likely caused by the colon rubbing on its self as the camera navigated through, now I'm not going to be bitchy enough to say that he's full of crap but what I will say is that his statement caused the rest of the medical team to roll their eyes and despite hours of googling from the hospital bed I have not found anything that backs up his statement. For whatever reason this man refuses to admit that maybe just maybe there is problem and he dismissed my previous concerns. I don't know if its ego or what but a child could be on fire in front of him and he will call it a minor burn - its frustrating to say the least.
Now we wait for the results of the biopsy. My hope is that if there is something that needs management its able to be done from a rheumatology standpoint vs GI because then we can close our file and dwindle down our list of doctors. The goal is for Sick Kids to feel that Max is medically stable and then they may be comfortable moving forward with the heart repair sooner then later. In the end a childhood as close to normal is all that we want for him (and all of our kids!)