We have spent the last couple weeks planning for Thomas's November 2nd GI reconstruction surgery, doing all it takes to prepare a homeschooling family of eight to have mama step away for awhile: no small task. However, these last 48 hours remind us that while organizing and planning is all well and good, and part of competent home management, ultimately we are on God's time and He might have quite different plans.
Chris and I already thought we'd had enough of a "bump in the road," so to speak, when on the eve of his birthday, he was rear-ended at fairly high speed by another vehicle (mere minutes after dropping off four girls at a party, so there were no children in the car, thank God). The offending vehicle is dramatically totaled and we await to hear if ours--which is less than a year in our possession and which we really like!--is repairable or totaled. Even that night, we could tell that Chris has suffered whiplash and you know how those kinds of injuries manifest them as adrenaline dissipates in the hours and days following and they can take an exceedingly long time to heal.
We thought that was enough! . . . but only a few hours later, it was 2:00 a.m. when Thomas woke up vomiting. I ended up taking him to the hospital by 4:00 a.m. and it's been a whirlwind since then.
On the home front, Chris's birthday passed without us celebrating in traditional fashion. Chris is juggling so much with very little thought for himself except that he knows he has to tend to his own health eventually for the sake of us, his family that he takes care of. (He plans to go to the doctor and get imaging on Tuesday.) The very next morning (Sunday), Chris had to go rent a vehicle for his larger-than-average family, and later had to bring belongings to us at the hospital, and for all these errands, the kids are usually just babysitting themselves. (Thank you to the R--- family for helping swap our cars and babysit at night!) Chris had been planning to work from Atlanta for this whole week in order to care for his own dad, who is having surgery, but clearly now Chris cannot do so: his brother Dan immediately diverted his plans, flew into Charlotte, and will be caring for Pop-Pops for a few days. Thank God for loyal family.
Meanwhile Chris keeps up with his full-time job, juggles calls with our (exceptional) insurance company, drives kids to and from their homeschool hybrid, delivers items to me every day, and gets meals on the table . . . even if maybe he is "cheating" and buying restaurant food sometimes!
I'm accustomed to our sitting in the Emergency Department for most of a day, but that Sunday morning, we were admitted to a room within maybe two hours flat (which is lightening speed). In retrospect, we have been watching worsening symptoms for a few weeks, and then particularly for the prior Sunday through Thursday. We had been in daily communication with Thomas's surgeon, who is very accessible and was closely monitoring the situation. On Friday, we thought Thomas's symptoms were resolving, but then on Saturday, he went back to barely eating any food and the vomiting resumed with much speed that night. He ended up vomiting 19 times on Sunday . . . and there is NO indication it is an illness or anything contagious. Bloodwork would show that and Thomas would have other symptoms of illness, but he does not. He vomited so much that blood began showing up in his emesis from his GI tract being stressed.
Thomas received a KUB (abdominal x ray) and a UGI/SBFT (upper GI with small bowel follow-through), which involved 90 minutes of live-time x ray while Thomas bravely drank a disgusting contrast dye without complaint. The surgeon was able to rule out a bowel obstruction, which is a big relief, because that would have required emergency surgery.
Thomas cycles between feeling miserable, curled up in a ball in bed, to cheerfully doing art or watching fun movies.
Thomas is so docile and precious. This morning he was sound asleep when the lab tech came in at 6:00 a.m. to draw a few vials of blood. After discussion, I realized that for all those months of early morning labs, Thomas had a port in, so blood could be drawn without so much as waking him. Now we needed blood results back before morning rounds, and I faced having to wake my sleeping child to have blood drawn without EMLA cream or anything. So I woke him with cheerfulness and explained. He said, "Okay," sat up in bed in the dark, and had blood drawn without a single tear or complaint. Then he went back to sleep while I stayed up and marveled at our new normal.
So far, the only intervention giving Thomas relief from the retching is thorazine, which is an anti-psychotic medication used occasionally for nausea and vomiting. It works straight on the brain and it was the only medication that worked in this way for Thomas while he was in-patient last winter. Thorazine helped Sunday night, then the vomiting resumed when it wore off on Monday morning.
The cause is likely Thomas's reconstructed anatomy, which the surgeon knew originally would have to be repaired some day. When Thomas was so close to death, his surgeon had to do a simple, but tried-and-true, repair, but he knew the drawbacks and that over the next year, he'd have to go back in and fix some things. We can't be sure this is the reason, but it is currently the most likely cause.
Thomas has to remain fed (by mouth or by J-tube or even by TPN), remain hydrated (by IV, by mouth, or by Pedialyte through his tube), his bowels have to function, and he can't be vomiting continuously. If we can achieve those things, he will be stable enough for discharge and we can wait out the week at home till Surgery Day.
If we can't get him stable, we have to look at options (which are already being discussed by the team). If he won't eat by mouth, can we tube feed him 100% all week? If he won't drink by mouth, can we keep him hydrated via tube at home? If we can't even do that, do we move his surgery day closer? The reason everyone hesitates is that his surgeon Dr. B---- is on clinic duty this week, not on hospital duty, and both we and he want him to keep a very close, daily, in-person eye on Thomas during surgical recovery. I'm not sure whether he is more of a Hawk or a Mother Hen, but it would be hard to express how close care he takes of Thomas. It is a complex situation and we really do not know how the timing is going to play out.
And in that are so many lessons for me as I've tried for weeks to fulfill all my duties. To make sure we had professional family photos arranged before Thomas's surgery. To get the house really organized and send everything off to Goodwill. To make a meal plan for my absence. To prepare all the traditions of All Hallow's Eve (Halloween) and All Saints' Day. To work on costumes. To buy special no-sugar candies and non-food treats for Thomas. And now it looks like none of those things may happen. Even if we are discharged, I may have to completely clear the decks this week and do full-time nursing of Thomas to keep him stable for eight more days.
Prepare to do what God asks, at any time, whether He gives you a month of advanced notice, or even if God asks you to change plans entirely at two in the morning. When I fight this, my heart is in anguish and rage, but when I accept it, I think calmly, "Oh! Okay, apparently this is what I'm doing now!"
P.S. This note is only for my fellow book worms: As you know, I'd purchased two new books to read during our upcoming hospital stay, but then I ended up reading through both of them during Thomas's day and a half in the Emergency Department two weekends prior. So in the ensuing weeks, I bought some more really compelling books. Well, you'll laugh that I'm already almost finished with the first book because of this unanticipated hospital stay. What is a bookworm girl to do?!