Well, Jack was pretty worn out after his MRI last week!
He awoke from the anesthesia very groggy and fussy, but did great after just an hour or so and played happily all afternoon. My mom was a tremendous help in getting Jack and me to and from the hospital for the MRI this week, and getting John and Jack to a pediatrician’s appointment, all while helping to transition Sam to his new day care environment. Did I mention she’s missing her anniversary for all of this?? She’s amazing!
An added complication this week… we’ve decided to drop our second nursing agency. In addition to longstanding concerns that we have had about how this company trains its nurses, we’ve had some recent problems with night nurses who have slept through alarms. I’ve even had a hard time waking some of them. In the community of trach/vent families, this problem is common place. Let’s face it, there isn’t a more sleep-inducing place on the planet than a baby’s room- especially when that baby has a ventilator, which is an extremely effective white-noise maker. Many of our nurses are parents of young kids, working more than one job, and sometimes pulling shifts that would make normal human beings buckle. But sleeping through alarms… particularly oxygen alarms, really frightens us….
… especially since Jack pulled out his trach for the first time while in the car in a Walgreens parking lot last Sunday, signalling that the risk of trach-pulls is growing. I was in the store, and John was minding Jack and Sam when it happened. John singlehandedly got Jack out of the carseat, uncuffed the trach and safely got it back in. I bet that the Walgreens staff won’t ever forget the sight of John racing through the doors with a red-faced baby in his arms yelling “Meg! He pulled his trach out!” while holding a medical apparatus in place with his fingers. I had the easy job of hooking up some oxygen and reattaching the trach ties. John was truly the hero.
If you search Google for images of “Fatherhood” what you typically see is a dad with a healthy, bright-eyed youngster, helping with homework, playing baseball, giving piggyback rides, fishing, or holding a flawless newborn. You don’t see a lot of special needs dads represented pretty much anywhere. You don’t see the crumpled shape of a man lying on his child’s floor next to a bunch of intimidating medical equipment, which he knows like the back of his hand, and can troubleshoot with the best of ’em. You don’t see the dark circles of exhaustion, the hours spent pouring over medical equipment inventories to make sure that the order is correct. You don’t see the guys who are making those hard phone calls to nursing agencies or yanking a choking baby out of a carseat to get his trach back in. This is an absolute tragedy. There’s no better symbol of strength, dependability, resourcefulness, responsibility, love, and tenderness on this earth than a special needs dad who rises to the occasion.
And he still manages to get the chores done, too! (with his helper(?) Sam, of course!)
And now… for the big news.
Jack’s MRI was clear. There was no new evidence of the tumor. We visited the oncologist today and I had the opportunity to compare the MRI scans taken back in February, and those taken last week. The big news is that in the right posterior portion of Jack’s brain, where that horrible, nectarine-sized tumor had crowded out and smashed the structures of Jack’s brain, one could see nothing but healthy anatomy. Dr. Walter pointed out the spinal cord, the pons, the brain stem, the cerebellum…. all (almost) fully regrown, rebuilt from the rubble. In April, the MRI image that I had seen was that of a huge, black hole where the tumor had been scraped away. No gray matter was left there; just a crater. Looking at today’s image was like looking at a strange and beautiful garden of leafy, organic shapes, packed together densely and thriving.
Jack seems to want to show us what this all means. This weekend, Jack climbed up the stairs in our house, right leg leading, left leg following, one by one. He made it all the way to the top and popped his lips triumphantly. He also started placing his hand images that we asked him to show us within the pages of books, doing so with enough consistency to convince us he was understanding what we were asking him- even if he didn’t always get it right. Finally, and most exciting, he has begun to creep sideways while holding on to furniture. Nurses N Kids will soon be fitting Jack with a walker to get him used to the feeling of movement without much risk of a bad fall (his balance still needs some improvement.)
Yep. Our JackJack is pretty incredible.