This post: Nov. 11 – Nov. 14 // For all posts CLICK HERE
How do you describe ‘stable’?
….Especially when life hangs in the balance?
Many have asked how AJ is doing. Sometimes we get to chat and give a few details. Sometimes we point people to the blog. Often our answer is ‘he is stable’.
What do we mean by that?
His condition has not drastically worsened (as previously thought) but continues to have little blips of improvement. When we had our Thursday morning weekly doctors meeting it came up that the doctors and nurses were quite surprised at AJ’s overall condition. He’s had times off the Bi-PAP machine for 1-2 hrs at time a number of times, he maintains a positive spirit and good sense of humour with the hospital staff, and he has learned to speak clearly enough with the mask on that he can often self-direct things like clothes changes and transfers from bed-to-wheelchair and back again. For those wondering what ‘self-direct’ means, that is when a person (like AJ) helps direct those helping him as to what the best order of steps are in accomplishing care over them.
The word ‘miracle’ even came up in the discussion. We can attribute this to the grace of God as He knows exactly what He is doing in all this. Thank you for your prayers as you approach His throne of grace on AJ’s behalf and ours as well.
You’re Dutch too?
AJ is intentional in getting to know nurses and other staff by name. Some of the nurses told AJ they were from Dutch background. AJ was quick to point out, “ya we are too”….referring to the Wanders family. This is a little humorous as AJ is of African-American descent, visibly noticeable as well. No matter, as he has boldly stated in the past, “I am half American, half Dutch!”
Perhaps there is some truth to the saying that we become a product of our environment.
They went on to discuss some Dutch foods, and found a new common bond — stroopwafels — one of everyone’s all-time favourites.
I wonder if it is a Dutch thing to be so focused on the task at hand that greetings can be overlooked. Wilhem (notice the Dutch name), visited one day with a new game and AJ was so excited to get it, he didn’t even say hi to Wilhem!
Stable… with challenges
There are a couple of conversations that describe some of the challenges as of late.
Joanne shared this with me by text on Friday (Nov. 12)….
“Kate from Child Life just called me, she had a chat with AJ about him possibly going on a zoom call with his class, he wasn’t sure yet if he wanted it to be a video call that the kids see his face, he said he had to think about that one.
She also asked him what he thought was going on with his body/health. He said he thinks he’s doing pretty good and maybe he can live to be 17. Or even 30. Kate said the doctors don’t think so he’s actually weak in his lungs, AJ said yes he knew that.
The topic of death came up and Kate asked AJ what he was thinking about that and he said I’m not afraid to die, I know I’ll be with Jesus and I know I have a sick body right now.
Kate was blown away by that, she said what a testimony…”
And then the next day we were confronted with ‘Things the doc wants us to ask AJ’:
“What do you think is happening? How long do you think you will stay in the hospital? You’re not afraid to die, but are you scared of how you will die?
Do you ever think of coming off the BiPAP & how the nurse can make you comfortable if that’s what you want?
What would it look like to go home & pass away, is that what you would want?”
These are tough questions for AJ to process. He did express a fear… not of dying, but of how he would die. That’s probably true for many of us! Tough questions for Joanne and I to process too. We don’t even know exactly what are the best decisions moving forward; we pray that God would make it clear.
Saturday night, I popped in alone to visit AJ. We enjoyed some time laughing at some funny home videos on YouTube and we watched a guy build a real lightsaber (remember we are both Star Wars fans).
When leaving, AJ can be so sincere. I hold his hand…the part of his body that still has movement.
“I love you, Dad.” he says and pauses, “I hope I can come home soon.”
I was stuck for words. “I guess we could pray about that.” We were going to just that, but then the nurses came in to begin some night routines. “It’s ok, Dad… another time.” And off I went to indeed ask God what ‘home’ for AJ would even mean right now.
The visiting schedule has worked in making sure AJ has sufficient visitors. He also has expressed the fact that he doesn’t mind some alone time in the schedule. Meanwhile the family continues to do a tremendous job in taking turns sleeping over with AJ every night (including Mom again, his favourite).
The last few days AJ has developed another cough. That is concerning as that is what caused his hospital entry in the first place – coughing and not being able to catch his breath. He is not strong enough to cough very well on his own, so it is quite helpful that the hospital has a cough-assist machine. It’s a machine designed to pressurize your lungs with air and then help force out a good cough. It has worked quite well for AJ, but during our Sunday night visit the nurse mentioned that AJ had needed this machine 9 times today. That’s a bit high, as the couple other days he would use it 3 or 4 times.
We also noticed he was tired this evening having spent a couple of long spurts off the Bi-PAP machine on Friday and Saturday. Being off the breathing machine can be compared to us running a 10 km marathon with little to no practice. We would be exhausted! And so if AJ spends time off the Bi-PAP breathing machine, this too can become tiring and cause fatigue to his overall well-being.
So things for AJ have been more or less stable. But ‘stable’ flexes inside of a broader band width… bouncing between some little highlights and some minor setbacks. But by God’s grace, he carries on and still reveals a vigor for life in his somewhat limited yet expressive ways. And he continues to be a delight for hospital staff, family, and visitors alike.
I guess part of living each day as if it were our last helps us to live each day to the fullest. AJ’s life realistically looks closer to the end than for most of us, and yet not one of us can guarantee our next hour, our next day, even our next breath. It heightens the awareness that each day, each hour, each breath, is a gift from God. So… how to rejoice in that which we do have?
“Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.”Psalm 139:16