Just shy of October and I put out the first fall decorations this year!
Milestone #1
Thomas graduated from Physical Therapy! He exceeded all the goals we set for him. He can walk, run, hop, and ride his bike and scooter. Yes, his gait remains funny; yes, his left ankle, in particular, and legs overall remain tight; and yes, his overall muscle mass remains very reduced. But we parents can continue to work on strength and endurance with our active little fella!
Milestone #2
Thomas has learned how to operate most of his tube feeding pump! While he certainly does not know how to program it for the night, he has watched us silence alarms, hit pause, disconnect his tube, reconnect his tube, and hit resume numerous times nightly for six months. This week, he asked to start doing it himself and, while I supervised, he did it all perfectly. This means he can get up in the night to use the restroom without us even getting out of bed.
This is a Really Big Deal. For lo these six months, once Thomas is connected to his tube at 7:30 p.m., I did not leave the bedroom until morning because Thomas needed an adult supervising. What if my boy needed help? He would be tethered to his pump in a very vulnerable way! A homeschooling mom of six has a lot of work to do in the evenings, none of which I could ever do. Instead of my spending time with my husband or older children (who do actually need their mother) elsewhere in the home, they have all come into the bedroom to whisper conversations with me or watch a movie on the iPad in bed. I never went anywhere in the evenings to have a social event with other adults.
I'm not quite ready to completely say Thomas can handle his own pump such that I won't even be in the room, but we are on the cusp!
Endoscopy and More Surgery Upcoming
Thomas had an endoscopy procedure last Thursday which is the final of a series of procedures his surgeon was doing to gather information about how Thomas's GI reconstruction is functioning 10 months post-gastrectomy. This information has resulted in Thomas's surgeon recommending an additional GI reconstruction surgery which will occur within about a month. Our hearts are heavier than we can describe with this news; however, we know it is the right move for Thomas. He is still retching and vomiting daily (often several times per day), and his weight is not progressing as hoped (he has not gained any weight and is five pounds less than he was 10 months ago). His current GI reconstruction was done under emergency conditions, with lots of post-surgical inflammation that limited the surgeon's options. A more intentional and planned approach is needed.
You might think that after Thomas going under general anesthesia 25-30 times, I'd feel cool as a cucumber about it. I remember the very first time, which was for his diagnostic MIBG scan after we found out he had cancer: I was terrified, since general anesthesia always carries a risk of death, and I couldn't fathom my four-year-old "going under," and I believe I got in touch with my friend F---- whose son has had to receive general anesthesia many times as well.
Now Thomas has had general anesthesia 13 times for surgeries, at least 6 times for cancer scans, and then numerous other times for procedures in Interventional Radiology, at least one prior endoscopy, and other miscellany.
I don't know why I become so tense because I'm not worried about him having a reaction to general. Maybe it is because I am responsible for coordinating everything: answering all the intake questions a few days prior and then the day before . . . knowing which meds to hold 24 hours prior (they conflict with anesthesia), and then being sure to hold all meds the morning of . . . setting my alarm to turn off his tube feedings in the middle of the night . . . making sure he remains NPO that morning . . . packing his favorite stuffed animal and everything he needs, including snacks for when he wakes up since hospital food is full of sugar . . . .
I don't know: it's just a lot and now I know I will feel like a bristling badger the night before a general anesthesia event and I simply anticipate getting almost zero sleep that night.
Of course, that's what happened, so I went into the day having caught only a few snatches of sleep. Chris isn't sleeping well either these days, which is no great shakes. I hold things together during times of tension and then I crash, so that meant coming home from the perfectly fine endoscopy and my ordering delivery pizza for dinner (which I realized I haven't done in many months!), drinking a glass of wine, and hiding in my room to read a new book.
On a related note . . . Thomas achieved another milestone: This was the first time he was wheeled back to the OR without any Versed. For those who don't know, Versed is a medication that makes the child very happy and calm and also will cause the child to later forget what happened. It's basically a miracle drug for sending tiny tots into scary procedures without Mama and Daddy. Thomas has been in the hospital and had so many procedures that he really is calm as calm can be: when the nurse asked if we needed to give Versed this time, both parents and staff agreed we probably did not! Thomas did great wheeling into the OR fully awake, and it's always good to give one less medication (especially heavy hitters like benzodiazepines).
New Book
I finally received my pre-ordered copy of Better than OK: Finding Joy as a Special-Needs Parent by Kelly Mantoan, whose little old mommy-blog I have been reading for years. I already love this book, which is a lifeline to what I am going through. (I rarely want to speak on Chris's behalf so I will stick to myself.) I am often reading one paragraph and having to put the book down just to cry and digest the words, but then I can't wait more than a minute or two before I'm compelled to open it back up and keep reading.
Speaking of Books
I am in the midst of a project writing a book for Thomas, what psychologists would call a trauma narrative. He approached me to have a conversation last week and it turns out he has forgotten much of the zillion conversations we've had about his cancer and surgeries over the months. It seems astonishing because we talk open openly all the time, but especially everything he learned about his cancer was 15 months ago, which is 25% of his entire lifespan! He was four and turning five when we had those most important conversations covering things like CANCER IS NOT YOUR FAULT OR CONTAGIOUS AND YOU DID NOTHING WRONG. So, Mama has spent this week starting to write a book for Thomas telling him his own story to start to finish, written for a six-year-old audience, and illustrated with photos. I plan to have it self-published so it looks like a real book (carrying weight and authority), not just a stapled print-out on copier paper. What else is a better use of my time than writing when I'm awake at four or five in the morning each day?
Arts and Crafts
I'm learning how to knit again, something I was proficient at in my 20s but since lost all ability to do. I'm trying to find ways to RELAX. Another daughter is knitting a stuffed teddy bear for Thomas. She also is sewing up a storm on my sewing machine. All of this means my sewing room is a disaster area again, but at least that reflects LIFE AND CREATIVITY. Meanwhile, Thomas never stops doing his paper arts and crafts, leaving piles of paper scraps, tape, glue, feathers, puff balls, crayons, pencils, and pens in his wake . . . but, again, LIFE AND CREATIVITY.
Wrapping it Up
We are wrapping up a week of unpacking eight suitcases, attending four medical appointments besides the endoscopy, a lovely social visit from our old Scottish dance teachers, and completing extra schoolwork, our having to catch up from missing Friday and Monday's assignments for travel. We are really hoping to finish most of the extra work today so that our upcoming week of Fall Break from the hybrid homeschool is truly and honestly a week of rest!
No comments:
Post a Comment