This post: Nov. 21 – Dec. 4 // For all posts CLICK HERE
Wow! It’s been about half a month since I wrote and over a full month since AJ has been in the hospital.
AJ was admitted on October 23 and is now well on his way towards 7 weeks (a special date in a run of 7’s)! Truly a miraculous situation! What started out as an apparent ‘near-end-of-life’ hospital admittance has been moving increasingly towards potential plans for going home.
AJ was moved out of PICU on November 23, exactly one month after being admitted. This was an unexpected turn of events for all of us. Many did not think he would come out of PICU. And here he is now move onto a regular ward. If things progress well enough in the ward, the next move would be going home. We continue to marvel at the grace of our great God. So much so we continually petition God… “You’ve brought us this far… What is next? Direct us in the next best steps for AJ!”
Granted there are some hurdles to overcome.
A first one would be increasing the amount of time AJ can be off of his Stellar breathing machine. This has been a bit of a setback with his move to the ward, where AJ went from 2-3 hours being off the machine to shorter 20-30 min spurts off the unit. We are all not sure why this occurred in sync with the move but wonder if a bit of anxiety set in having to deal with all new nurses & other staff in the ward. AJ pretty much knew all the PICU nurses — by name even — and also had his favourites! That, for the most part, changed with the move. And as with many of us, if our anxiety increases, often so does the stress on our breathing!
The ideal amount of time to be able to live a fairly normal life with a partial dependence on the Stellar machine would be having at least two 3-4 hour periods off the machine during the day. These machines are not meant for 24 hour use due to facial and skin stress. So if this cannot be attained, then we would be back to a medical discussion on what other long-term breathing arrangement would be best suited for him. And tracheotomy came back into the conversation as one of the options seeing as ‘end-of-life’ is not as readily prevalent.
A second hurdle is the need for 24 hour home care support. This can take on various forms including PSW’s and nurses. I think with all of the connections we have and the hospital has, this could be achieved. But there would also be the administrative/scheduling side of it all that would need to be carefully attended to (which, btw, Joanne is very gifted at).
A third hurdle is a training and equipment availability hurdle. AJ would need some specialized equipment going home with him and appropriate training would be needed for those operating the equipment with and for him.
And a fourth hurdle, more from a holistic level, is that AJ is not the same young fellow that left us weeks ago. Sure he is the same young fellow — although he had a birthday in the hospital too — but he comes home with many more needs. So some of his former daily routines like going to school and enjoying certain outings will have to be recalibrated and reconsidered. But we are up for the challenge.
So discussions and plans will continue on what the next few weeks and months look like. Ultimately we still lay it all before God and have that same plea, “Lord lead us in all this when the way forward is not entirely clear.” And besides, our obstacles are nothing for God.
Here are a few stories from on the floor in the hospital.
Crum! AJ’s beloved power wheelchair broke down! It is less than one year old and the main control panel wiring harness failed! AJ has used it almost everyday even in the hospital, being transferred into it to enjoy time out of bed and easier communication with visitors. Plus he has taken the odd (t)rip through the 3rd floor. So we eagerly await parts… which could take at least 2 weeks to come in!
The hospital has a loaner, but it just isn’t the same (and it is not a power chair…only a manual).
AJ has been eating quite a few regular meals lately as opposed to just being fed by a feeding tube. He has enjoyed things like pizza (including Ms. Laura’s famous homemade pizza), chicken nuggets, an egg salad sandwich, home-made spaghetti (from Gramma Kathy), a McDonald’s meal (whoa… a setback??), the odd vegetable, milk, and an all time favorite — potato chips….stocked up by none other than Aunt Kelly.
We all still take turns sleeping over with AJ. It was really great that after his move into the ward, it was only two days before he got moved to a nice large room with its own bathroom. This makes sleeping over a little easier for the guests.
Of course with the move, AJ could count on Wilhem to stop in for a visit. He took care of setting up all the PS5 stuff again. Thanks Wilhem!
With Christmas approaching, what would a room be like without a Christmas tree? Pastor Joel and his wife stopped in and took care of this little detail.
AJ enjoyed viewing pictures and a video of the “baby upstairs”, Hope, sent by momma Brittany. Little Hope and AJ both sport the same BiPAP nose breathing tube. AJ was fascinated to see such a small baby having to be equipped with a similar apparatus as he was. This was an instant connection with such a precious new friend and family in the hospital.
Numerous guests keep showing up for AJ which is great. His EA from school even popped in and played some video games. We were informed that younger boys and girls can start visiting now that he is in a ward. If you want to visit be sure to contact us, because technically only 2 people are allowed in the room at one time! (Although sometimes we slip kids in behind the bed.)
November 29 was a special day being Mom’s (Joanne’s) birthday!! Gramma Heemskerk and Aunt Jacq visited in the morning. They let AJ choose some gifts from the hospital gift shop to surprise Mom with when she came later that day! What great fun that was!
And Aunt Jacq made cupcakes for the occasion! Funny, there was no trouble deciding to take the mask off to eat a cupcake!
Mom spent some time reading with AJ and also commented it was getting about time for a haircut. After Mom left Katrina showed up and they sang Christmas songs together. More fun for the season!
We are all getting used to the new surroundings in the ward and getting used to the new staff…particularly AJ of course. But we have also reflected on how exceptional the PICU team was. They journeyed with us through a time of intense challenge and difficulty and blessed our lives immensely. As I said before, sometimes the love of God shows up through the people he puts on our path, including medical care-givers… especially when the journey gets tough. God is with us, and He places His care around us in many ways, shapes and forms!
Speaking of God’s care, we have been embraced by our amazing church community as well. We have received many cards, emails, encouragements, meals, and support. Many have said they are praying for us. We often feel lifted… not knowing the energy or strength is possible, and yet there it is. Thank you to all of you and thank You God for the abundance of Your grace in all of life’s circumstances!