Wednesday, July 31, 2019

World Down Syndrome Day - March 21st, '19

Everyone's mismatched and colorful socks to celebrate Jason. :) 
Trying to get a quick shot in before bed - but Leanne wasn't having it. This is real life my friends. 
So big, and so capable. :) 
Dear Glenda stopped by to show me her wearing the colorful mismatched socks in honor of Jason. :) 

Amy's Birthday - March 8th '19

The day after we came home from the hospital after Jason's initial burn stay - was Amy's birthday, so we did a little party for her. (the night before - her actual birthday, most of the surround Heikoops met at a Wendy's where we had supper together. Which was wonderful)



Loving her very own Calico Critter Family.

Making her cake. :) 

Rainbow and colorful like her! 
Precious 5 year old. 

Jason's Burn Story

Jason's burn story - there are some burn pictures that may be too much for some, so just warning you for those that don't like the "medical" stuff. :) 
March 6th started out like most normal days do... but in the afternoon, while downstairs for 10 minutes I heard Jason start crying - then waited a minute to hear how bad it was, then heard Katy ask Erik "did he get into it?" And she started crying and panicking. I dashed upstairs, figuring out quickly from Katie that Jason had touched some industrial dish washing soap. I knew it was strong, and it was usually kept in the back and in an unreachable area of the cupboard, but we had to recently pour it into our dishwasher manually as something wasn't working right. (we have an industrial dishwasher and this was the first soap that we used with it) Jason had gone into a cupboard he doesn't touch, pulled stuff out so he could sit inside, and somehow just sat in a little puddle of chemical. 
I had no idea how bad it was. I looked at his hands, thinking maybe he touched it there, and fed him ice-cream in case he got some on his tongue, just shoveling it in - to stop the crying and in case his tongue was burning... 
I called James crying asking what we should do - but he didn't think it was possible to ingest any as it tastes so bad... 
I started to run the bath just to make sure everything was off his body, putting on "Baby Shark" to distract, using a pliers to turn on the water as our tub has been having issues, and with little Leanne all stripped down about to have a bath, I pull of his pants and saw it. 
A huge black burn. 
Total panic and immediately grabbed the phone to call 911, all with a crying baby, and noise everywhere. Bath water running, Baby Shark going, and trying to tell the dispatcher what happened. 
Katie heard my panic and tears, and called James back on the other line to get home fast, then I sent her to get a neighbor to stay with them for a few minutes, and called Deanna to get here too. Sweet woman was amazing to get there so quickly. 
Neighbor came (miracle there, as she doesn't normally come home early! Thank God) and Ambulance came, and we got in, and off to our local hospital. Jason wasn't crying by now - (as his nerves had been all burnt away in that area). He just laid on me as we were both belted onto the stretcher, and brought into the hospital.
For the next 3 hours, and after phone calls made by the Doctors to Toronto's Sick Kids hospital - we started running water on his burn in the tub upstairs. I got into my first pair of scrubs, and first sat on a stool while holding him - then almost fainting after an hour - sat right in the tub for the next while. 
Dear Deanna, and her sweet mom who was visiting, came and brought us Swiss Chalet food and we all (with James who had come right away) ate supper in this little hospital bathroom. 
We had warm blankets on him which kept him comfortable as possible. 
Then, it was off to Toronto - as that hospital knew how to deal with chemical burns. Jason and I got into the ambulance and began our trip, while James ran home to get some stuff. On our way, the ambulance got hit by Plexiglas piece that fell off a pickup trip. So we waited for 30 minutes on the side of the road while another ambulance & crew came and we switched into that one... Thankfully Jason slept for a while, and played happily with a little toy truck that made noise from our hospital. 
When we got to Sick Kids, we were in an Emerge room for a bit, before going upstairs to the burn unit. 
And then, greeted by great staff, we began what ended up being almost 36 hours of doing tub duty. We would be in the tub with Jason, running water on his burn for 2-3 hours at a time, then out for 30 min-1 hour. (I think once we got 2 hours out!!) and then back in again - all to get his PH levels down. 
Getting ready for the next water segment. James got creative and figured out how to get the shower nozzle in just the right spot so we didn't have to hold that part and Jason too. 
Jason was such a champ. He fell asleep a lot of the time, and didn't fuss too much when awake. We had warm blankets on him, and that helped a lot. 
It was long and rough - lots of wet clothes, and trying not to fall asleep while sitting up... but eventually I didn't care anymore...tho the nurses were probably worried I'd drop him or something. So thankful that James was able to be with me - could not have done it without him. We took turns a lot -I did the first long shift through the night, and he did the next while. And back and forth.  
And whenever we were out for a bit - it was glorious!
Showing off his burn. Living off apple juice and yummy hospital food. 
Dear Ben, Dee and Amanda stopped in - so kind. It made it so much better to have them there for an hour or so. (and they sneakily took our parking ticket that we got :) and paid it without us knowing) 
Love for Daddy. 
Finally - they said, you can go home now! The PH levels were not going anywhere lower, so plans were made for surgery the next week to start cleaning out all the dead skin and such, and prepare for skin grafting. 
It was Amy's birthday that day, and I wanted to be able to give her a little bit of a birthday. We got home early afternoon - and Jason and I just slept. The kids were all at Auntie Diane's by then (we had a babysitter come for the first night/day - then Oma - then Auntie Diane with Deanna's help too. 
Our welcome home poster. :) 
Sleeping on the couch with my boy. 
For the next 4 days, he had a bandaged leg, and was okay for mobility. He had just started walking - maybe taking 15-20 steps at a time, so we were getting there! But it was sad to see him favor his leg for so many weeks. He learned to fall on his left side, and I was so proud of him for just keeping going.
Then next Tuesday began the 6 week surgery process. I went in with him for the first time into the surgery, and it was kinda hard to see him to go sleep - but it was all needed. And I was strong thanks to the Lord and many prayers - and adrenaline. :) You just keep going cause you have to. 
But a few hours later, after recovering a bit -  we were sent home until the next week - with lots of morphine and Tylenol and Advil instructions - and then began a hard week. The poor guy would wake up in the night, crying, then in the morning crying in pain, and I'd rush to get his med's in him as fast as possible - doing the closest as possible dosages to keep him comfortable. When he was comfortable he still was happy, but how I hated his "in pain" cry. 
He got lots of apple juice in those 6 weeks! 
Then the next week - we were back in surgery. Very early mornings for us - 4-5 am we'd leave, James would drop me off, and then surgery would be anywhere from 8 am-12 pm. And he would be fasting from the night before, so it wasn't super fun waiting for surgery to begin. The staff were all great - and definitely got to know a lot of child life specialists, and surgical nurses/doctors. We had about 3 surgeons that would take turns working with him. 
After the 2nd surgery I learned to bring a stroller with me. The first two times I carried a lot in my arms walking through the hospital. :)  I learned and watched what other parents did to make their time a bit more manageable. 
During the (eventually 6) surgeries, I did enjoy some quiet time. I bought myself a Starbucks drink, or something from Tim Hortans - then read, worked on my planner, texting people about the surgery, and just had some alone moments. Even though I hated this whole experience, I did look forward to a few hours of just me, before jumping back into looking after Jason full time. 
One time I broke down in surgery room - it was the 4th surgery and it was again not successful in the sense of being able to do the skin graft. I was so tired, and discouraged. And I had some quiet tears in there - I think a few people were wondering what was going on. :) 
I met some neat parents in the pre-op (or post-op)  surgery waiting room - there were many parents and kids in a close area, where you talk to each other. It was encouraging and inspiring to see what many parents are going through with their kids. And whenever I'd meet a parent of a special need's kiddo, there was always a neat connection. I'd be reminded often that though this was not fun, hard and never wish it on anyone, his burn situation was really an easier one than a lot of children out there. 
It took 3 surgeries to get all of the chemical removed - they had to go right down to his muscle layer - and take out three layers of skin and fat. Each time they'd staple a cadaver skin on top to prepare the skin/blood vessels for the actual skin grafting. I was so thankful for skin donors. :) 
After the 3rd surgery, they ended up putting a wound vacuum on him, to help keep the skin attached firmly to his wound. They also put a cast on his leg to help keep it all together. 
We had to stay in overnight the 3rd, 4th, and 5th time, so those were longer hospital times. 
The black part is a sponge that is attached to his wound. That would vacuum was an interesting accessory for two weeks. Every where he'd go, it went too. At home we'd just keep moving it to where he was - thankful he wasn't full out walking yet - and we had home care nurses that would come check on him, and check the vacuum to make sure it was all working right. 
Even with his wound vac, he'd would still push stuff around the house, or try to kick the soccer ball with his leg in a cast. He just kept going as best as he could. 
My sweet boy. He didn't wear pants for 6 weeks. Or have a bath. 
Getting ready for another surgery - and so cheerful again. :) 

Enjoying his hospital lasagna. We got it down to a science of what we'd order for food. :) And I'd get Jimmy the Greek sometimes, or one time had some Thai food which was soo good. 
This was taken after the 5th surgery. He was not sleeping well, and I was alone overnight with him, and just so tired. I walked him up and down in the stroller for a couple hours, and it was just so draining. Long nights, as so many moms and dads know in these hospitals. 
This is when his 1st cast started to slip off and hurt his foot at home. So we had to break part of the cast off, until James took him back to Sick Kids to get it fixed up!
A similar thing happened with his second cast too - it slipped down, so we had to break it at the foot so it didn't cause foot issues.
Any time we had a problem - I would email our burn specialist, and she or the surgeon would respond very quickly - so thankful for that.


Once his bandage came loose - on Sunday right after James left for church. (I stayed home for a few weeks to keep Jason as healthy as possible or surgery would be cancelled) and I had to call him back to help bandage it up. The specialist gave me instructions on what to do - it was so awful to see part of his deep wound. I almost couldn't do it, but James cheered me on while he held the little guy. 
This was the last time he was sedated - not a complete all out surgery - but he had to be sedated while they took out all the staples from his last successful surgery! 
Happy to be home and to eat his favorite apple sauce. 
I thought it was so crazy how the jeans he was wearing that day weren't even burned - just some discoloration in the dye.... but how it did so much damage. 
This was his wound a few weeks after surgery. 
We had and still have to moisturize it all the time - and have daily baths, but this is what it was looking like. It looks amazing medically speaking - but especially the first couple months, I didn't like to touch it. It hurt my mother's heart to see him with such a big scar, and feeling bad that this whole thing happened. God allowed it, and I don't know why, and I learned from it too. 
And this is more what it looks like now. 
The red rectangle will fade in a year or two - that's where they took skin for his graft. And the rest will fade as well - but how much, we'll see! We may have to do laser therapy to help with some of the skin issues, but that's in the future. The surgeon closed up the wound 20% -so smaller than it was!
There are just so many mercies in all of this that we praise God for...
-That he got burnt in a non visible area - that no joints, fingers, face or eyes were touched by that chemical. He would have gone blind. 
-That God had the right people at the right place for us. So many people helped and prayed for us. 
-That I was at the end of my morning sickness with our new coming baby....and more... 

So many people helped watch the kids during this time. My parents came, drove out and surprised us - (in the next post!!) and stayed for a week so it was easier to do hospital time. Aunts and uncles helped babysit, and friends from church too. It was a lot of time for people to put in for us and we are so thankful for that gift. 

Tuesday, July 30, 2019

Little Brides - March '19

My little girls playing brides. Erik was gone that afternoon, so it was a perfect time to do some girl stuff. And even though I didn't feel like hauling out the wedding attire, they enjoyed it so much. 
Katy wore my dress, Laura wore Great Grandma Jost's dress, Amy wore a bridesmaid dress of Nelly's, and Leanne wore Katy's flower girl dress from Sarah's wedding. 
We played coming down the isle, to "Gabriel's Oboe" which is what my bridesmaids came down the isle to at our wedding. It was so sweet. :) 







Love this smirk of hers. :)