Trooping through Surgery and Beyond

{This post:  Jan. 21 – Feb. 8 // For all posts CLICK HERE}

It’s been awhile since I’ve written. The days pass by quickly and yet progress is slow.

We are feeling the lingering impact of restrictions placed on hospitals regarding how many visitors can visit patients. Since late December it’s primarily been Joanne or I allowed in for AJ as key care givers. Prior to the restrictions there were 12 of us rotating through to help take care of AJ’s various needs day and night. That intensity of care has not been possible for Joanne and I to keep up with just being the two of us. Having lost that intensity of care, we have seen his mental and emotional well-being suffer which has directly slowed progress with his physical recovery. His hospital stay continues to lengthen and his going home date continues to get pushed back.

The staff has told us very few other patients face the unique challenges AJ has in order to achieve home-going capacity. Rarely do patients stay as long as AJ.

Numerous times we have requested exceptions to allow for even just two extra family supports for evening and/or overnight assistance, but so far nothing. So we do get a little discouraged.

Objectives

Back at the start of the year we had 3 objectives to meet to get AJ home: targets to hit, training to occur and home nurse care to find.

The targets include reasonable medical stability and equipment availability. Amazingly equipment availability was no issue. Everything ordered to make home life possible got delivered. But AJ’s medical stability has been inconsistent. He occasionally hits targets for time off the Bi-Pap machine but it is infrequent and often unattended. The nurses and therapists are busy with many patients. This is the key area where extra family members could have been part of more consistent fulfillment of home-going goals. This is also an area that has had the most creative brain-storming on how flexible the hospital would be on ‘reasonable medical stability’. Supports need to be in place to make going home under a flexible trial possible. We all (family & all medical staff) agree that going home would have its risks, but would also have its benefits to seeing AJ improve.

Initial training has been successful. With the arrival of all the necessary home-going equipment — Bi-Pap machine, oximeter, cough assist machine, and suction machine — Joanne and I could receive all the training we needed. Plus we had some bedside training using the actual equipment that AJ is hooked up to. It’s very interesting to learn all these new devices. There is also training lined up for various family members and other care givers. This is scheduled to happen over February and March.

Nurses. What can I say? Nurses are in high demand, and we are faced with a shortage. No nurses have stepped forward in response to any of the memos put out from the hospital regarding AJ’s home needs. We are in the midst of discussions as to potential options. If you are reading this and know of a nurse who would be willing to do in-home care, please let us know (details below). This is the last and biggest hurdle to overcome in the home-going plan. Having been flexible in medical stability it will be crucial to have sufficient in-home nurse care to make this work.

Hospital Life including Surgery

And so life at the hospital continues. AJ’s surgery date approached and he faced it like a trooper. He was actually excited about his surgery date! He also received a personal encouragement video from a boy from our church who had had G-tube surgery himself. He was telling AJ it would be no problem! Thank you!

The day before surgery, a special visitor was arranged to come see AJ. This had to be outside though… for 2 reasons… so AJ would get some fresh air, and because the special guest was Dan’s (AJ’s biggest brother…a.k.a. other Mark Wanders -wink-wink) outdoor German Shepherd! What great fun to finally meet Dan’s new growing puppy! Joanne and I also made it to the hospital that day to wish AJ all the best with his surgery.

Day before surgery, meeting Dan’s new dog Stella in front of the hospital.

Surgery day, January 26, came and went. We were told that we did not have to be at the hospital but we were on call for immediate updates. All went well! Praise God! We received a call that AJ was in recovery and doing fine. We went to visit him a little bit afterwards but he was pretty groggy.

The next few days we switched up the visiting schedule with special permission. Joanne and I were to be out of town, so we had Aunt Kelly and Gramma Kathy take care of visits with AJ. They did a tremendous job at a time when AJ was at his worst — at the height of pain the few days after surgery!

But they had a few recovery tricks up their sleeves as any good Aunt and Gramma would. Gramma brought in a Happy Meal one day, and Aunt Kelly, she made sure AJ was well stocked in chips. These are important things to an 11 year old during time of recovery! And AJ reported that it was great to have them in to see him for a few days.

Joanne and I returned back into the schedule February 1st. And what a special day that is.

Five Years!

February 1st is the anniversary date that we took AJ in to our home and life. We have an annual tradition to let AJ pick a restaurant of his choice. This year being in the hospital, Joanne let him pick a meal of his choice. I thought for sure AJ would have picked steamed broccoli, but no, he picked a full-on meatball sub. I should have known. AJ is a chronic meat lover. Just ask Ernst, his faithful meal delivery man in the hospital…how many times AJ orders chicken nuggets or hamburgers.

And you know, we are grateful that AJ can still enjoy meals. He loves food. Particularly meat, chips, and cookies (I think a lot of guys out there would approve of this diet). He still has muscle function in his mouth and throat and as long as he does, we love to see him enjoy meals. The reason for G-tube surgery was 4-fold…to take advantage of this hospital stay rather than rebooking him in the future, to do the surgery while he was still strong enough, to prepare for days ahead when eating might get difficult, and to assist with current medicine intake and hydration. Plus a fifth bonus is that he nose longer has the nose feeding tube bothering his face, nose and throat! And he looks a whole lot better without that yellow tube across his cheek!

The other day, February 4th, we had some great news. AJ’s wheelchair parts had arrived and the repair man is scheduled for February 8th, (later this day of posting). If that is successful I think this might add to some excitement around the hospital and AJ will once again get around and make his presence known to various medical staff on floor 3Z. He took his loaner wheelchair for one last boot at couple days back and also operated a remote control car while doing so! No small excitement for the nurses once again!

Three things to wrap up

  1. One consistent message we hear from AJ is how much he misses family. As the government and the heads of medical health make decisions on what they think is safe for hospitals, there is a little guy on the 3rd floor at Mac who needs a few more familiar people in his life. We have asked for this for weeks to no avail. Pray that this changes soon, so that not only AJ, but many in similar situations can once again have loved ones bless their care and recovery.
  2. In the midst of it all we have been blessed by being surrounded by great big arms of love. We have received many meals back at home, care packages for AJ, gift cards for us or AJ, texts, emails, calls, personal inquiries, and cards of encouragement. And top notch care from the hospital staff — stretched as they are! Thank you!! It really is a great blessing and sometimes almost overwhelming to be the recipients of such great love and care. As I’ve said to AJ before, sometimes God’s love shows up in love towards us from other people. How we have been surrounded by God’s love in tangible ways!
  3. A word to the truckers. We have a brother-in-law, Jan, on the streets in Ottawa. That would make it an uncle for AJ. So Joanne and AJ created a short video together for Uncle Jan (and the other truckers) and sent it to him. It’s one of those videos that stirs a little emotion. Well, rather than me describe it, here’s an audio of it….

To the truckers, from all of us.

———————————————————

Nurses…

If you are interested in part time nursing work, here are some of the in-home nursing duties required for AJ:

  • bathing, showering, dressing, feeding
  • familiarity and use of Bi-Pap machine, oximeter, cough assist machine, suction machine
  • G-tube use
  • some companionship: playing games, reading, crafts, walks, short trips

Approximate Shifts (hours are flexible) Based on approx 20-25 hrs/week:

  • every other Sunday 8am – 12noon
  • Monday nights 4pm – 9pm
  • Tuesday mornings 8am – 12pm
  • 2 weeknights 5pm – 9pm

You can email joanne@raymarlandscapes.com or leave a comment in the Comment section below.


3 thoughts on “Trooping through Surgery and Beyond

    1. Hallelujah! I’m so happy for AJ. It is so important to have his own wheelchair – one that he is completely familiar with. Thank God it is finally done! Happy wheeling AJ!
      As far as nursing is concerned it is such a huge obstacle to overcome, but we have a God who is able to do far more than we can imagine, so that’s what we will be praying for.

      Like

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