This post: Nov. 15 – Nov. 20 // For all posts CLICK HERE
“Unbelievable.” That is the word one of the head PICU doctors used in describing AJ’s situation.
The doctors and nurses have been amazed. And so have we. AJ has had an incredible week where there have been some ‘gains’ in his health. Four weeks back it was survival, three weeks back it was to make AJ comfortable, two weeks back he stabilized….and now, AJ is moving in the direction of “unbelievable” as one of the doctors put it… and actually making some ‘gains’.
Unbelievable is a good word. Because that is a word that describes ‘when God steps in’. Believable things are normal; unbelievable means something special has happened. As I mentioned to our kids last week, never underestimate the power of God and of prayer.
Here’s how the week unfolded.
Things started off this week with Jocelyn staying overnight with AJ. He had one of those restless nights, including getting late to bed and waking early.
Gramma Ann and Joanne’s sister Jacqueline dropped in for a few hours. AJ shared some funny cat videos from online with them figuring they would enjoy that.
All the laughing worked AJ up to having another popsicle!
In the afternoon a teacher came in (from Mac) and offered to do some school work with AJ. He was not impressed. I can hear him thinking, ‘Great, whose silly idea was this? Life right now is not supposed to include school work!’ However, he did settle in for some listening to the teacher read a story.
A big change came today regarding his breathing assistance. He was tested and fitted with a device with a smaller mask – one only covering his nose.
The unit seemed comfortable and an apparent positive change.
We were surprised to hear about this unit because just a couple weeks back we had been told that the only practical option was the Bi-PAP machine. And here he was getting tested for a much smaller machine. This machine is called Stellar.
It was further explained to us that a couple of weeks back this didn’t seem like it would even be an option for AJ. AJ’s comment from a few weeks ago came to mind, ‘maybe God will give me another 7 years, I don’t know’. Here he was today exploring uncharted territory.
Today marked a last visit with Nana & Papa as they were returning to the States.
After they left, he was tired. Having had the rough night last night, AJ was sleepy by 9:30 pm. Joanne, who was staying over with him tonight, read a devotional with him and then had to adjust his pillows about 15 times before he was comfortable enough to sleep. AJ has about 6 pillows alone to keep his knees in place!
AJ slept quite well, while Mom, not so much. She gets bothered by the numerous beeps from all the machines in the room.
After yesterday’s fitting, AJ received delivery of his new ‘nasal mask only’ Stellar machine. It is a much smaller device than the BiPAP machine and is portable as well, whereas the BiPAP was not. Plus it simply uses oxygen in the air, as opposed to bottled oxygen, as it assists his breathing.
The respirologist said it is a machine that he could go home with.
‘Go home with’… were words said in passing, but words that hit us with surprise and delight. Again, just two or three short weeks ago, going home was not even an option, and here today it was said in passing like it was a given. Wow! Praise God for developments not even on the radar just a short while ago.
The odd time AJ will tell us that he misses home. Perhaps home is now on the horizon… even if the trajectory is not entirely certain yet.
The new Stellar machine allows for his mouth to be uncovered now, so it is much easier for AJ to talk and be understood.
Another great advancement for AJ is that he has been having extended times off the breathing machine. The machine allows for some reserve built up in his lungs and then he can enjoy time off the machine. And if this occurs while in the wheelchair sitting up, he has also been introduced to some real food lunches this week!
Today he enjoyed a mini cheese pizza with Gramma Kathy visiting to observe. He surprised the doctor & nurses that he was able to eat this without any trouble.
After pizza, it was time for some other activities. AJ was accompanied by Kayla who helped him build some Lego Robotics online.
Later that afternoon, it was time for a card game! Mom and Jeremy played a round of UNO with him.
In the evening Katrina stopped in.
And good old brother Dan was the sleepover partner tonight.
When Joanne (Mom) and I arrived today AJ was eating another pizza. That was chased down with chocolate milk and Oreo cookies. AJ was enjoying this very much.
Particularly with the cookies… he said out loud, “Mmmm, those are sooo good.” These were his first cookies in weeks!
This was our first time seeing the Stellar machine and we got a brief overview.
Shortly after that Dr. Cupido (one of the head doctors) came in to say hi and we had a lengthy ‘on-the-spot’ discussion about AJ. She was really impressed with his progress and described it as ‘UNBELIEVABLE’. We were told that the next development was to plan towards moving AJ out of PICU and into a ward. This would need a bit of careful planning but could happen within a week or so. And after that, if all goes well, plans could be set in motion for AJ to go home. All of this will take time she cautioned, but plans are underway for the first step, that being towards the ward. We were amazed at what we are hearing! We understand a lot has to be put in place to make this happen, but either way, ‘going home’ wasn’t even a consideration just a couple short weeks ago. I recall the comment that we should not expect AJ to leave the hospital alive. And now here we are talking about the potential of going home. Even if it is a long shot yet, the conversation today is much different than it was.
Thank you God. You carry us and you give each day to us as a gift. The days we live out are the days you have planned for us.
The doctors and nurses are amazed at how well AJ is doing. And we too are amazed… also at the great God we serve. He hears and answers prayer. Thank you to all of you who faithfully hold us up in prayer!
Tonight marked the first time Dad (yours truly) slept over. It went ok. Up a few times in the night for some adjustments to AJ but overall it was not a bad night.
This was the morning of our weekly doctor’s meeting. Much of what was discussed yesterday with Dr. Cupido in the room was reiterated and shared with all attending and other staff involved.
Here’s a note we sent to our own kids.
“Kids, never underestimate the hand of God and the power of prayer. The doctors are raising their eyebrows and saying, ‘Incredible.’
This was sent to your mom…
Hi there Joanne.
Dr. Meta was just in…the respirologist specialist. He listened to AJs lungs. He went over the plan/goal for what his home life would look like. They are going to be working at getting his breathing machine only to be on during the night time and not needing it during the day. Of course this will take time. Slowly working with it off 1.5 hours at a time and eventually two 1.5 hours in a day and keep on extending it as his lungs get stronger.”
Do all these developments this week mean that AJ is getting better? Yes and no. Yes in the fact that he has overcome the acute respiratory attack that he has experienced, which was complicated due to his Duchenne Muscular Dystrophy. But no in the fact that it doesn’t change his underlying condition of potentially weakening muscles including in the heart and lungs due to DMD. Either way, we are seeing improved health during this hospital stay, which came across as highly unlikely just a short time ago. And for this we are grateful.
November 19 & 20
Joanne and Jeremy made a visit on Friday and I went with Joanne on Saturday evening.
Visits are interesting and there’s lots to talk about. As I’ve said before, the family and many friends have been incredible in making AJ’s hospital stay pleasant and well supported.
And here we sit at the end of the week in awe of God. Not surprised, and yet surprised at His grace in answering prayer. Where does it all lead to? We don’t know for sure. And that’s ok. Because that’s part of walking by faith. But in the challenges our faith and trust have grown in ways we would never have thought. And so grows our praise and adoration of our great God as well.
AJ had faith from the beginning when we were in the thick of it. “Maybe God will give me another 7 years”, he had said. Agreeing, I broke it down and said let’s start with today, and then 7 days, then 7 weeks, then 7 months, and so on.
Seven days are long past. And 7 weeks are fast approaching.
We know things could change with one acute attack of sorts or one bad infection. But we aren’t dwelling on the ‘what if’s’. We are taking things one day at a time, enjoying each one as it comes, and trusting God for all the ‘7-timelines’ He wants us to cross.
‘Unbelievable’ means something special has happened, something hard to explain and maybe not always making sense. But through the eyes of faith, we see God stepped in.
We smile. “That’s our God!”