This post: Nov. 2 – Nov. 10 // For all posts CLICK HERE
Week of November 2 – 5, 2021
7 Days!… the first leg of the 7-year journey.
What a week it’s been! Carried along by God’s grace and power, we surpassed 7 days today, November 5!
The next leg of the journey…7 weeks…onwards towards Dec. 17!
We’ve started to get into a bit of a routine with integrating hospital visits into our weekly schedules. The visiting schedule is working well, giving everyone a chance to visit and helps keep visits to 2 people at a time. Some sad news for the kids who wanted to visit…the hospital staff reminded us that children are not allowed to visit. We had a few of AJ’s pals that wanted to stop in, but for now we have to hold off. (Hopefully Dan will still be able to visit; being a big kid and all.)
Every night someone takes a turn sleeping over. Part way through the week I asked AJ about people sleeping over. “All the people are great, but Mom is the BEST.” I found myself nodding in agreement.
Val took a turn again and managed to avoid any further ‘sibling rivalry’.
When Joanne told AJ that Dan was coming to sleep over his comment was: “I hope he won’t be a bear if I have to wake him up in the night” He was reflecting back to the days at home when Dan was woken from his hibernation…
AJ continues to do very well at speaking clearly through the Bi-PAP mask. Most of the time we can understand him and only occasionally have to resort to typing out a word or phrase. My dad visited along with me early in the week, and we managed a conversation through the mask. AJ also tried getting Grandpa onto a video game – but to no avail.
On Wednesday, AJ told Joanne he was dying for something to eat (watch the word choice AJ). His food craving particularly… meat lovers pizza. Go figure! We hold the thought and mark it as a discussion point with the doctors.
Joanne’s sisters Jac & MJ came for a visit bringing some nice cards & a stuffed German Shepherd named Spirit. MJ specifically bought it as it reminded her of AJ.
MJ brought a video from her kids, Cooper & Taylor including Cooper building a significant train track out of Lego. AJ loves Lego anything!
I’m not sure if you saw it on the news, but apparently the Hamilton police/SWAT team (dressed as superheroes) got called in because AJ was having too many guests. They scaled the walls and towers of McMaster only to find AJ hiding in his room. Many of the other kids came down to see what was going on, but because AJ remained in his room, they came right up to the courtyard outside his window. When they saw him, they gave AJ his own special show and then entered his room to…only to say hi and have a photo shoot! They shared with AJ that they were actually performing for all the kids but because he couldn’t make it down, they came up! What a fantastic group… the police and McMaster hospital for arranging special things like this for the kids! And AJ was left with a spiderman quilt of his very own!
AJ’s school community, Smith Public School, sent over some gifts for the family. The Vice Principal stopped by our home with it all, and with a meal for the family. She included her own Mac laptop on which was a wonderful school video of various teachers, students and other staff wishing him well. They all miss him very much! On the Mac was also access to Disney Plus. What a wonderful school!
It was decided to hold a weekly doctor’s / family meeting on Thursdays. At a meeting last week we had been discussing AJ’s situation and how to communicate to him his near-end-of-life condition. Now, being almost a week in, we discussed what on-going care expectations from both sides (doctors and family) might be. We discussed the establishing of his new base line… his new normal. We asked about AJ eating food and what the goals might be of having his mask off, all inside of keeping AJ’s wellbeing in mind. It was clarified that AJ cannot survive without the breathing machine, as it basically helps his lungs do breathing that he no longer can do. The machine helps him build up lung ‘reserve’ which allows for time off the machine, mask off. A goal of doing this would be to give him time to do things that the mask would impede, like eating, drinking, talking, or perhaps even zoom meetings with classmates. It was mentioned that any time off the machine could be a risk to his fragile lungs, but if the desired result was achieved in contributing to giving AJ a great day or unique experience, then perhaps the risk remains worth taking. To rephrase, if removing the mask gives enjoyment and facial relief, then doing so on occasion is worth it as opposed to keeping the mask on endlessly, which in itself is not good for his skin.
This brought us to another significant time slot this week: 43 minutes. This was the longest time that AJ had his mask off and managed to breathe on his own. Formerly he’d have his mask off for short periods of time, like 5 or 10 minutes, often associated with mouth cleanings,
….but Thursday afternoon when Joanne and I were there, he had it off for 43 minutes!
I got him started after the nurses pulled his mask… I set the class video in front of him on the Mac laptop. He loved it and kind of lost track of time! He was so into it, he even tried waving when students waved! So cute!
Joanne and I went to grab some lunch for 20 minutes to let some other family have a short visit and when we came back his mask was still off! I think maybe a little Disney Plus helped as distraction as well.
He said to us, “I’ve got another 5 mins to get to 15 mins.”….. We laughed and cheered him on, “You’re coming up on 40 minutes!!” He then decided he better mask up, and by the time that happened, he hit 43 minutes.
It was exciting but we can definitely notice that AJ has to work harder to breathe and gets noticeably tired.
I heard that 2 teachers stopped in to visit. They played video games with AJ, but he mostly won. He probably picked one of those tricky games to play I’m sure.
Rounding off the week,
Katrina stopped by with a friend one evening and then returned with her husband Dathan the next morning. More video games as Dathan attempted a better go at it than the teachers.
Nothing like working up an appetite with all that gaming. AJ decided to give some food a go. Seeing as the pizza idea might be a little hefty, it was decided that AJ would try a bit of a hamburger… 2 very small pieces & then some water to wash it down. Hmm…did Dathan scarf back most of the burger, and save just two small pieces? We may never know. And after all that, AJ said it didn’t have much taste. (Maybe pizza next time.)
When the food party was over, Gramma Kathy & Nick visited and while they were there, Child Life came in to help begin making a handprint legacy. So I’m guessing as we all visit, we’ll all be adding our hand prints to this work of art.
And who better to observe the makings of fine artwork, then Pastor Joel, who popped in during the creative work. He was just starting to get ready to give his print, when Child LIfe reminded him it’s just for family.
Speaking of family, more family arrives…Papa & Nana visit for a couple hours.
Then Joanne (Mom) and Jeremy show up. Mom reads more cards to AJ that came for him, AJ views a video from Wyatt and has a good chuckle. They hang up a nice picture from Caleb.
Jeremy does some quick housekeeping… he really doesn’t like a mess. And Jocelyn shows up & the 3 of them have a Friday night movie night.
What a week it has been. AJ is stable, even though his little body slowly weakens. But what he lacks in physical strength he makes up in spirit. He always has a positive attitude and never complains. He continues to amaze us all. I had this verse in mind for the last day or so….
” ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.”2 Cor. 12:9
November 6 & 7, the Weekend
When Joanne and I arrived Saturday afternoon, we met one of AJ’s mentors from River’s Edge who was on the schedule before us. Visits back to back with the people before you give a chance to chat and catch up. With River’s Edge being a horse facility, we started to imagine therapy horses for hospital visits. If Toby came as a therapy dog, certainly we should be able to slip a horse into PICU as well?? If not, I know River’s Edge has kittens and rabbits too. Hmm.
After our horse therapy big ideas, our guest left I asked AJ what we should do with our time. He had begun playing his Spiderman video game, and informed me that he’d like to watch a movie with me. But first…it was getting close to a face cleaning time. Now kids, this isn’t your average warm facecloth scrub down. It’s a little more intense.
First AJ’s mask is removed. Then he gets some extra oxygen support through the nose. Then all of his protective skin tape from around his nose is removed by pulling it off including using special wipes that help unstick the tape from his face. It still hurts a bit, like pulling off a sticky bandage, but overall he did really well having it all removed. Once all the tape is removed and any traces of glue, his face is washed with a special soap and gently wiped clean to dry. Then it gets to air dry for a bit. Once dry, he gets taped up again to help protect his skin from the constant pressure of the mask.
Why the tape in the first place you might ask? The special tape helps protect his skin from the on-going pressure on the Bi-PAP mask on his face. But it needs regular changing. And AJ’s skin needs regular airing out. Technically the mask only works for about 10 days without causing skin irritation. We are grateful that so far AJ’s skin has held up. Thank you for your prayers for AJ, because even in things like his face care, we see God upholding him.
It will be important to keep up this kind of facial care to help reduce the risk of irritated skin with constant mask use. The mask is a critical part of AJ’s life as he cannot survive without having breathing assistance for significant parts of each day.
This weekend included another move for AJ. Into his third room! We went from room 5 to room 9 to room 12. I’m wondering if they are aiming to give AJ the full experience of all the rooms in PICU. With the move we lost the luxury of the overflow room (with the kitchenette and extra seating area) and our own bathroom. No worries, as far as AJ is concerned, he has all the same comforts as the other rooms and now he is right across from the nurses station/reception area so he will be able to keep a good eye on things. He might even make a new friend or two as they are all starting to get to know him and his specific needs.
AJ is communicating very well. Joanne and I went to visit again on Sunday night and we had no issue understanding him through the mask. We helped the nurses transfer him from his wheelchair to his bed and some of the time he was self-directing us all to ensure his sensitive knees didn’t get hurt in the process. We got him settled into bed and then his favourite overnight guest….MOM…. started to straighten the place up and get settled in as well. Joanne (Mom) would be staying the night. How lovely for AJ… the overnight guest that he likes BEST. Hopefully they both get a good sleep.
Good days and bad days…
November 8, 2021
Some days don’t start off right. Do you ever have that? And we’re not always sure why.
When I arrived this morning, AJ seemed a bit off. Joanne had stayed the night and said that a transfer from bed to wheelchair was going to be happening soon. I wondered if maybe one of the nurses wasn’t clicking with him or something. Joanne and I helped with the transfer, which is quite an ordeal, but he got further frustrated as his legs somehow always manage to get accidentally slightly straightened, which causes much pain. (AJ’s preferred leg position is bent as if sitting in a chair.) It is hard to avoid, and we are all cautious with him, but his legs always have to pass by the main support post of the portable lift in order to complete the transfer.
At home we have a lift system that suspends from the ceiling so AJ can turn full circle with no leg impact. Plus the sling from home fits a little better than the hospital one. So perhaps the trepidation of the transfer was giving a little extra stress this morning. But once in the wheelchair, he settles quickly and enjoys the different positioning; it’s just the transfer itself that brings its own uncertainties no matter who assists.
The doctor has even prescribed small doses of morphine prior to transfers to help mitigate the pain, but regardless he still ends up feeling pain if a leg is altered just a wee bit in the wrong direction. Like father like son… pain meds never really seem to work that well!
We did stay for awhile and AJ settled.
Sometimes I wonder if frustration builds just from an overall struggle with the situation, being in the hospital and all and facing the limitations of every day.
Interesting that when it was time for us to leave, there was a 2-3 hour space after us with no visitors. We asked AJ how he felt about that, and he responded, “I don’t mind some time alone; it’s been busy lately. I’ll be fine on my own.”
So indeed he did have some time alone. Bear in mind that in PICU there are always nurses on watch particularly when no visitors are present. And let’s not forget that AJ falls under the careful watch of our heavenly Father as well.
Katrina came to stay the night and a transfer was made back to bed. AJ experienced a bit of a coughing spell, trying to clear phlegm from his throat. This can be frustrating because he doesn’t usually have the strength to give a good hefty cough. Things eventually settled, and it was time to close out this not-so-good-day.
November 9, 2021
A good day… what a difference a day can make.
Maybe because it was a special day?
Joanne and I took a detour on the way in. It was our 30th anniversary and it was a morning to splurge. I took Joanne to an A&W drive-through breakfast (second breakfast for all you Lord of the Rings fans – I had already cooked a warm breakfast for Joanne back at home). And hey, we both like their coffee and food (Good Food makes Good Food) plus we know the staff at the Grimsby Casablanca location. We then ate and drove and when we got to the hospital I still had to finish my coffee. I told Joanne to go on inside as I would finish my coffee in the beautiful sunshine.
AJ, smart cookie that he is, was quick to say ‘happy anniversary’ to Joanne the moment she walked in. And I followed about 5 minutes after her. AJ was so pleasant and in a way better mood today. What a difference a day can make!
We decided to shut the screens off today and just talk. This was so good. We talked a little bit about some of the ways we like to tease Mom. And about what good days would look like in the current circumstances, and how it would be good for AJ to have time off of the Bi-PAP mask so that his face skin would not deteriorate.
AJ loved hearing about home life and what the cats were up to. We then listened to a pod-cast I had found called “Daily Dad Jokes” on Spotify and had some good laughs. It was so great to laugh together and see AJ laughing.
We continued the laughing when it was time for AJ’s breath stacking exercises. This is a daily exercise to stretch his lungs manually. Cliff, the respirologist, got a hearty welcome from AJ (which was so neat to see) and they proceeded to do some hefty breath stacking! AJ’s eyes almost popped out of his head. And after 3 times he said, “I think that’s enough now.” Apparently Cliff squeezes a little harder than when the ladies do it.
A couple of new folks joined us from QOLACARE. We talked about a potential wish list, which ended up becoming a gratitude list. AJ was asked what are some things he would want and he started listing off all the things he already had and was grateful for! This was precious to witness. We did end up including some potential up-and-coming things to do as well.
Shortly after this we left as next to visit was Gramma Kathy.
Apparently when Gramma Kathy was there, AJ went without his Bi-PAP mask for over 75 minutes, and in that time ate a popsicle! Way to go AJ!
November 10, 2021
Jocelyn had slept over after the anniversary party.
When Pappa & Nana showed up, AJ was asked to participate in a scavenger hunt on Floor 3. After the morning transfer, he got disconnected from the BiPAP machine and was able to operate his chair again no problem! He even showed the nurses his top speed! Amazing what a little scavenger hunt prompting will do. Again he was off the BiPAP for over half an hour.
This really is amazing. A little over a week ago we were preparing for end of life, and the next we are wondering what AJ might do next. We don’t always know how to receive this. It seems like AJ is moving his ‘base line’ slightly higher. How can this be? Is it a blip on the map and then he plummets or is God working little advances in AJ’s life?
We attribute this to being upheld by the multitude of prayers of the saints, and by the gracious hand of God. Thank you for your prayers!
Joanne and Jeremy went to visit this afternoon. They managed to get in a game of UNO. AJ asked why Jer was being so nice to him. But between cards and some other gaming on the Switch, the boys got a little competitive… and AJ commented how Jeremy was ‘back to his old self again’.
Every time visits are made, we bring new cards for AJ to read. He really does love this. It is so great to see how he intently reads each one, almost studying them.
So many have reached out to us with encouraging texts, calls, cards, emails, meals dropped off, baking, fruit, flowers, and the like. We truly have been blessed by all of you, carried by your prayers and by the love of the Father, through Jesus Christ, in the power and connection of the Spirit.