Friday, 28 February 2014
Maxwell has been given the all clear from cardiology and not only do we not have to see them for NINE months but Max got to return to school today - less than three weeks after surgery!
Physically he is doing fantastic, there are no leaks in the patch and no fluid build up around his heart and he has gained two pounds in two weeks which is a massive change from the year that it took to gain three pounds in preparation for surgery. Emotionally he is having a bit of trouble, he is clingy and quick to cry about things. He is a bit nervous about being away from Mommy and we (along with the Dr's) were concerned about how much worse this would get if he were home for the full 12 weeks (followed by summer break) so with a few precautions in place back to JK he went.
Max was very happy to go back to class today and he was so excited to see his friends. He is certainly tired after a full day away but its nice to be back to normal.
Thursday, 20 February 2014
Today during the after school craziness a knock at the door brought some excitement. Maxwell's teacher dropped by with an amazing amount of gifts from his classmates.
Valentine's Day cards and treats in a mailbox created for him even though he wasn't there to celebrate, books and paint, craft supplies, a Walmart gift card (which he plans to use to buy MORE Toy Story Woody things because the thousand that he already has simply isn't enough) as well as balloons and lots and lots of get well & we miss you messages from his friends. The feeling is mutual, he certainly misses his friends in return!!!
Dominique and I try to raise our boys with some simple notions.... that karma is real and what goes around does indeed come back around, that people may forget what you said or did but they will never forget how you made them feel and that you should always be a little kinder then necessary simply because happiness makes life more enjoyable. Moments like today reinforce that even though sometimes the circumstances aren't ideal there is always something wonderful happening around us. While Maxwell was going through the scariest few days of his short little life his friends (with the help of their generous parents) were working together to create something that would bring him happiness, aid with his boredom and reassure him that he is not being forgotten and that his friends miss him.
Max sat on his bed and went though everything that Mrs. R brought for him, he flipped pages and looked at pictures and emphatically corrected me when I suggested that he use the gift card to buy some new jogging pants (since he has now discovered that they are uber comfy). When he was finished looking at all the things his classmates gathered for him he said "I think I'm lucky"
- I couldn't agree more.
Thank you from the bottom of our hearts for going above and beyond, for doing something that wasn't expected but was so very much appreciated. The sense of comradery in the classroom this year is amazing and that couldn't be accomplished without special teachers and parents.
We feel very lucky to be a part of such a great community!
Friday, 14 February 2014
Today is four days post surgery and Maxwell is recovering so well, I am honestly quite shocked.
He went for his follow up today and things are looking great, their only recommendation is that we encourage him to breath deeper because he seems to favor shallow breaths at the moment which don't allow the lungs to fully expand. Not expanding the lungs enough could cause an infection or pneumonia and that's something that we obviously want to avoid. We will go back for check ups bi weekly for the next little while to watch for something called Pericarditis (fluid around the heart) - this is a common concern for anyone who's had a cardiac procedure but autoimmune disorders also increase the risk so because of Maxwell's arthritis they are just being a bit more cautious.
Today Maxwell is very much like his regular self. He has needed reminders about not running in the house, he has climbed up on the toilet to reach the sink so that he could wash some hot wheels which I am fairly certain had poop on them (I didn't ask.... I didn't really want to know the answer) and at one point he was even jumping on the bed.
This boy is always full of surprises!
Wednesday, 12 February 2014
Seven hours post surgery
Walking hurts but needs to be done
Home and snuggled up on the couch less than 48 hours after surgery.
After what seemed like a long preparation Maxwell finally had his heart surgery on Monday.
We arrived at Sick Kids Hospital by 6am and Max quickly had an antibacterial bath and got into his pj's. After a short play in the playroom he was given a fast acting sedative flavored like chocolate. Within minutes he became "chocolate wasted" - I have never seen him behave like that before, he was like a drunk old man... I have to admit that I found it rather hilarious. Once he was so relaxed that he couldn't even hold his own head up he was given to the nurse and taken to the OR.
Dom didn't handle it so well and broke down in the hallway, he was surprised by his reaction but I wasn't. While Maxwell has been sedated many times this is the first time that the surgery seemed so serious. This wasn't tubes in his ears or a colonoscopy this was cutting open his chest and stopping his heart while they repaired it.
After grabbing a bite to eat we headed to the waiting room where I got good use out of my netflix membership. Four hours later we were able to go see him, this was the part that worried me. I had been told to expect lots of tubes and wires and likely for him to still be on a breathing machine so I was incredibly relieved to see him sleeping soundly with only an oxygen mask over his mouth and nose instead of being intubated.
Later that night we were moved to the CCU step-down room and Max continued to sleep. I was provided with the room next door and instructed to take a nap. The nurse told me that if he wakes up they will come get me. I grabbed two hours shut eye and then went back to his bedside a little before 1am, imagine my reaction when I saw him wide awake watching Treehouse on TV.
I guess I made some type of face because the nurse quickly said "hes been awake for a while, we debated about waking you but thought you needed some sleep so we just gave him some juice and turned on the TV"
Decision made, there would be no more sleeping that night, besides as I've said before sleep is for the weak.
The rest of the night was rough, there was lots of crying to be picked up and snuggled and then bargaining for me to climb into bed with him. Neither was an option but Maxwell is cleaver as a fox.
All his crying made him throw up EVERYWHERE and I ended up having to hold him while all the bedding was changed. He cried so much, shaking from the pain and setting off the alarm on his monitor.... same thing happened when he threw up the second time, after that some meds were given to keep the vomiting under control. He seemed comforted with me laying my head beside his while I sat in the chair next to the bed and we both were able to sleep for a while (although when I woke the kink in my neck and arm told me to never do that again). In the morning we were given the "goals" - sitting upright within 24 hours and taking some steps by the two day mark, we should be discharged by around day 5.
Max is clearly a go getter and he must have gotten my "suck it up buttercup" attitude because before the 24 hour mark he was walking to the toy room. He cried the entire way but he did it, the applause from the nursing desk gave his spirit a boost and he was motivated to do more walking. Because of his efforts he only required a couple doses of the diuretics and his lungs sounded clear quite quickly.
Less then 48 hours after surgery Maxwell is now home and resting! He wont be able to return to school for 12 weeks but if there are special things going on where there is minimal risk of him getting bumped or "stretching in an unsymmetrical way" we can make an appearance. This made Maxwell quite happy as he will not have to miss Baby V coming to the classroom for the Roots of Empathy Program (major concern for a four year old who loves babies).
Recovery wont be easy, he is far from happy at the moment but I am so glad that its over and (knock on wood) so far has been uneventful.
Saturday, 8 February 2014
Doctor Maxwell is on call today
Maxwell is now collecting his own bravery beads!
This weekend is insane for me but I needed to take a minute to come here and write, to put everything into text because I know that weeks and months from now this will all just be a blur.
Earlier in the week we got the call from Sick Kids and Maxwell's surgery is scheduled for this coming Monday (in about 48 hours from now).
On Thursday we went for the pre-op appointment and cardiac teaching, the day was so long but we have a great patient coordinator who made the day flow smoothly. We met with the Physiotherapist, child life specialist, anesthesiologist, nurse, clinic coordinator, blood work team, hemoglobin specialist, surgeon, dentist and a resident.
They were all very straight forward with the risks involved and didn't sugar coat what we should expect to see.
I didn't really learn any new information since I have been info hunting for months but it was nice to get the details about sleeping arrangements (for me) and the CCU procedures etc. We chatted about needing to supplement food from home since his diet may be hard to oversee but the nutrition staff are top in their fields.
There will be bubble blowing done hourly in recovery and I need to get friendly with the "Three Little Pigs" story so that Max can help the big bad wolf blow the houses down. The Village Peoples "YMCA" will be acted out as well because raising his arms above his head will help re-inflate his lungs. Maxwell's trip to the dentist showed some beautiful cavity free teeth but his blood work showed that his anemia has returned so we are now in the process of trying to get high doses of iron into him before the surgery as low iron can be problematic. His little body is not tolerating the iron very well and last night consisted of five warm bubble baths, some Advil, lots of tears and a mom with vomit in her hair. Thankfully today is a much better day and we are going to try and give him the medication slowly through out the day instead of in two big doses.
My goal for the rest of the weekend is to plan for being away next week, laundry washed and clothes laid out, groceries done, rooms cleaned, suitcase packed and lists made for how I typically run the house. My Aunt B is sending down some toss in the slow cooker meals that Dom will just have to put in before he leaves the house in the mornings. I'm sure that the next week will be exhausting and overwhelming but I am also sure that everything will work out fine.