Back on the ice

A few months ago, we started Ian with skating lessons at the local ice rink. He did really well and had no fear. He is able to get on and off the ice safely, skate forward with relative success and is studying the nuances of skating backwards (something I myself have yet to master). He’s also learned how to safely fall and get back up again, two things he gets plenty of practice with each week. After he finished two sets of the skating lessons, we switched him over to hockey lessons. It’s a bit more involved than the skating lessons in that he has to dress out. Dressing a five-year-old in full hockey gear is not simple or speedy. Those practices are on Saturday and they’re something I’ve let Rich take the lead on. It’s hard for me as a mom to dress Ian in the locker rooms if there are other shy boys in there and Ian is not able to dress himself fully yet. And it’s just better for Ian to do this with his dad.

Today, however, was a special treat. It was “stick and shoot” this afternoon from 5:15-6:45pm, which is basically just open hockey practice for anyone who shows up. Rich and Ian both suited up and went out on the ice today. Ian was stoked and Rich was pretty pleased too.

They skated around a bit, practicing shots on the goal and puck movement. After a while all the skaters lined up to take turns shooting at the one goalie who had suited up. Rich had already decided to not bring his goalie gear today because he wanted to play with Ian, not field a million break aways from excited kids. When it was Ian’s turn to shoot the puck, everything went quiet. He meticulously pushed the puck down the ice, one little shuffle at a time. After a million minutes, he got within 10 feet of the goal and shot the puck. It went straight at the (adult) goalie, who easily stopped it. All the other players, adults and kids alike, tapped their sticks on the ice for Ian to congratulate him on his shot. It was really sweet.

I like hockey but I’m not fanatical about it. I know the rules, I recognize the equipment, I can skate well enough to be a decent forward (my backwards skating sucks way too hard to ever play D). But it’s not a passion of mine.

Watching Rich and Ian on the ice today, though, was pretty awesome. It was one step closer to Rich putting on pads in a game. One step closer to him putting on armor again. One step closer to normalcy.

Rich has had absolutely zero output since Christmas Day, even while increasing his eating. He’s eaten adventurous things like a Wendy’s cheeseburger and a few bites of turkey chili. He had a waffle yesterday with peanut butter on it, just like he would have done any other Sunday last year. He’s eaten unmentionable amounts of Trader Joe’s dark chocolate with almonds in it. He’s had a slice of homemade pizza (we haven’t braved greasy restaurant pizza yet). Tonight after hockey, we all went to sushi where Rich had a regular meal’s worth of food. It did make him so full I had to drive home, but his ostomy pouch remained bone dry.

It has been exactly six months since the fistula first appeared, gushing 3.5 liters of fluid a day. We are so close to the end of that epic chapter. Tuesday, Rich flies to Nashville and back for blood work (thanks for the ticket Curt!). If he continues to keep his output at zero even at 30,000 feet, I am calling his fistula healed. Either way, we’re having Mexican this week.

It has been such a slog for so long, it was extremely satisfying to watch both of my boys on skates. It warmed my heart even in that freezing rink.

Two meatballs

We were doing so well with Rich's output. His daily numbers were hovering around 200mL. I sent an email to Dr. Shen who did the surgery back in June with photos of Rich's incision/stoma and the giant Excel file of doom with his fistula output numbers. Dr. Shen agreed that we could experiment with some low residue food. If that increased Rich's output we could back off, but it was worth a try. On Thursday at lunch, Rich ate a Vietnamese spring roll. It's basically rice noodles in rice paper with one piece of lettuce and one strip of pork. That went down just fine.

The next day we went for dinner while running errands. Ian wanted pizza so we stopped at Fazoli's. Rich got a meatball sub with the idea of only eating one or two of the meatballs and giving away the rest. He ate two golfball-sized meatballs and according to him they were delicious. But while sitting at dinner, his output went up by 200mL alone. The next day his output was 1350mL. Needless to say Rich was discouraged.

On Sunday we had to get on a plane and that has been increasing his output as well. We ended that day with 1500mL and a very sad mood. But Monday was better and he only output 500mL all day. Today has been equally mellow, despite getting on a plane again. So I'm hoping we are working out way through that experiment.

This has all been a lesson in patience. After Rich ate the meatballs and told friends that it increased his output, several folks said, "oh, well beef is very hard to digest." To which he said, "Why didn't anyone say that before I ate them?!" And really beef and steak are what he's craving. He's not craving potatoes or apple sauce or rotisserie chicken.

But we will obviously have to take this very very very slowly. One bite at a time.

No news November

It's been a slow slog of a month for us. Rich's output is going down with the exception of days he gets on an airplane. The same thing that all that high altitude pressure does to your ears, it does to his fistula and literally pushes stuff out of him. But it's a known thing and one we can work around.

We need to make a follow up appointment with the surgeon in NC now that the fistula is on the ropes and hopefully about to get knocked out. Rich has been very tentatively experimenting with food. Mashed potatoes and cranberry sauce at Thanksgiving. Seaweed salad at the sushi restaurant. We've discovered that after five or more months of not eating real food, his gums have grown down and become even more sensitive than usual, so chewing is difficult. Just one more thing on the list to acclimate to. I'm hoping we get to the burrito stage very soon.

That lower wound that he had from the original surgery just won't give up. It's down to the eraser end of a pencil (originally it was about 2" across and 4" deep) but just won't close up that last little bit. So we just keep putting gauze over it and waiting.

The ostomy bags are working much better, thanks in part to significantly lower output. I can't remember the last time we've had a leak (knock on wood).

Rich has taken over a lot of his medical maintenance. He sorts his own TPN supplies. He mixes and delivers his own TPN now (thanks to extensions on his PICC lines). I'm just in charge of ostomy bags and lower wound dressings because he can't easily see them to do himself. He's also doing his own laundry again. Hallelujah! Now that Taj MaPorch is done (I owe everyone an update on that as well), we are both able to work in the office again with the exception of Wednesdays when he has the nurse come for labs.

After such a difficult November of barely perceivable progress and lots of anxiety, I'm going all in for Christmas this year. We are cash poor this year (see Taj MaPorch) but I'm trying to find all the things I like best about this holiday season right now to spread some cheer. We started the Christmas book Advent countdown last night and that was a rousing success. I'm a sucker and let Ian pick two books on the first night, but thankfully I still have enough to get us through Christmas Eve night. I encourage everyone to use those 20% off Barnes & Noble coupons as well as after Christmas sales to prep for next year if you haven't already.

So we're hanging in. Send us a card or festive letter to add to the holiday cheer around here.

1863 Edgewood Avenue Norfolk, VA 23503