Two-year post surgical checkup

We're in Boston for our annual visit with Dr. Peter Waters, who did a truly masterful job on the tendon transfer surgery that corrected Quinn's brachial plexus injury two years ago. Last year's visit was a nightmare, with Quinn uncharacteristically crying, hiding behind the curtain, spinning wildly (well, that one wasn't so uncharacteristic...) and refusing to be touched. Only the following day did his clueless parents realize that we had not prepared him for the visit, and the poor boy was terrified we were in town for another surgery. Duh.

So this year, LOTS of preparation. And a much better result, hallelujah. He raised his arms when he was supposed to, reached for the toy monkey when he was supposed to and generally did what they wanted him to do. And this was through three different visits - one with the OT, one with a fellow of Dr. Waters and one with Dr. Waters himself. We were very proud of our brave little patient. Despite all our preparation, through, he was quiet and solemn all day. Some fears are just hard to shake, I guess.

As for the doctor's report, he said Quinn's surgery was about as successful as it could have been. His range of motion and use of his arm (which was almost not useable pre-surgery) is at the top of what's possible. His only real deficit is strength, so the OT gave us some good ideas, like lifting balls overhead, having him hand heavy things up to me when we're emptying the dishwasher, etc.

Unfortunately, Dr. Waters said Quinn is doing so well he was lifting any limitations he had placed on him, meaning the ban on football evaporated before my eyes. But when he was the horror on my face, he said he would reinstate the ban just for me and would happily let me blame him for it. Whew!

The cast is OFF!

It's hard to believe it's been 4 1/2 weeks since Quinn's surgery, but I guess it has, because here we are back at the hospital. Our first stop was the cast tech lab, where Quinn climbed up on one of many beds and screamed in terror as a guy sawed at him with a little, but LOUD, round saw. I was pretty terrified, too, honestly.

Next up we saw Dr. Waters, who declared the surgery a great success. He said the transferred muscles are "firing" already, meaning they're attached and working.

Final stop on our Children's Hospital tour was physical therapist Megan, who took us through the exercises Quinn needs to do 2-3 times a day for the next six months. We took video so we can make sure we got it right and so we can show his new physcial therapist once we get home. She also showed us lots of things to do in day-to-day life to get him using that right arm, which he has spent three years learning not to use.

Already, we can see that he can do things he couldn't do before, like reach up higher and twist his wrist. But he is more reluctant than ever to use it - it probably feels weird to have the cast gone - so I can see that PT will be very, very important.

His own worst enemy

The good news is that despite the eight-pound cast Quinn is lugging around, he is feeling great. The bad news... despite the eight-pound cast Quinn is lugging around, he is feeling great. So great, in fact, that he thinks nothing of running across the porch and leaping off into the lawn, or standing up on the sofa or trying to climb up the side of a big rock. If he succeeds -- not surprisingly, considering how off-kilter his balance is -- he often falls. And hits his head. And cries.

It's like having a brand-new walker again. We have to watch this child like a hawk.

Seriously, I can't help but marvel at how amazingly well this kid is doing. And it hit me the other day that he doesn't know this thing is coming off in a month. To him, it's gotta be something like, "Well, I guess this is my new life." I'm a pretty optimistic person, and I truly believe I would be a basket case in his shoes. That cast is heavy. It's hot. It severely constricts him. It prevents him any use of his right arm. Good Lord, that's a lot to take in.

But Quinn has no time or inclination to worry about any of that. He's too busy looking for the next thing he can climb up on and hurl himself off of.

The car seat challenge

A tip for those having trouble fitting their kiddos into car seats:

Quinn's giant cast does not begin to fit in our car seat. The car seat expert at Children's Hospital told us we needed to find a local expert to help figure out what to do, and she told us we could find a list of experts on the website of the National Highway Traffic Safety Administration. I searched by entering my zip code, and noticed that one name on the list was our county health department, which I figured would know the best person in town.

When I called and said I needed someone to help me with a mighty car-seat challenge, they immediately gave me the name of someone who does training sessions on fitting SN kids into car seats. I dialed him up and he turned out to be a police officer. It was 5 p.m. "I'll be at your house by 6," he said. And he was. Wow!

Even he had trouble. He said Quinn would definitely fit in a SN car seat, but said that one for a child his size would cost thousands of dollars. There are rental seats available locally for smaller kids, but not for kids his size. Yikes.

After much tinkering, adjusting and thinking, Officer Reeve figured out how to make it work. It takes some doing to get him into the seat arm first - good exercise for MaMa! - but he fits in snugly, safely and comfortably. We are SO grateful!

Home again

Quinn did astonishingly well on the plane trip home. That was the part of this whole ordeal I was most dreading, and it really was no big deal.

To be honest, I think codeine may have been a factor. At my mom's wise suggestion, we gave him a dose of his pain meds shortly before each flight. The first takeoff was really tough - he could not get comfortable in the seat and was squirming, pulling off his seat belt and crying pretty hard. After takeoff I managed to get him to lay down with his feet in my lap and he went almost immediately to sleep. Miraculously, he stayed that way for the entire four-hour flight. I even got to read a book and drink a hot tea.

In Dallas he had a nice dinner of his beloved vegetable lo mein, and on the flight home he laid with his head in my lap and watched Baby Beethoven (known to Quinn as "teh bear vi" after the violin-playing teddy bear that makes a couple of appearances near the beginning of the video.

He's pooped and we're pooped, but we're all glad to be home.

Already walking!

Amazingly, Quinn is walking on his own. None of us can figure out how he's doing it, but he's doing it. He gets tired really fast, not surprisingly, and wants to be carried, which is a mighty challenge.


He falls quite a bit, which is scary - tonight in the room he went straight backwards and bonked his head on the floor. Ouch. It's also very difficult for him to sit up straight because his cast goes down to his hips. That makes high chairs, booster seats, regular chairs and sofas all very tricky.

We're a bit nervous about the plane ride home tomorrow. But if the past few days are any indication, he'll find a way to get through it.

Choo-choo!

Quinn is a train fanatic, and loves nothing more than going to the small train station near the hospital and watching the choo-choo's come and go.

Today we went for an actual ride on a train, to Faneuil Hall. He LOVED it.

Share my pain

This is the Wiggles song and video Quinn requested at least 100 times, all night long, in the hospital. Every time they woke him up for some procedure or another, he'd point at the TV and ask, "More more quack quack?"

I was horrified the next morning to learn Quinn's roommate Zack and his dad heard it every single time - I thought hospital speakers could only be heard from one bed at a time. I guess not...

I challenge you: Watch it and see if you can get it out of your head!

http://www.youtube.com/watch?v=U4dmelafrvk

Out of the hospital

Quinn has been discharged and we're back at the Yawkey Family House. We were told he'd be weepy and cranky for 2-3 days, and then realize the cast isn't going away and start to adapt to it. Instead, he started trying to walk while still in the hospital, which is extremely difficult because the cast is very heavy - I'd estimate about 10 pounds - and holds his right arm straight up and straight out. He's both top heavy and side heavy.

In the hospital he had a really tough time putting one foot in front of the other and couldn't hold up his upper body at all. Back here, though, he is doing much better. He immediately wanted to go to the awesome play room ("Play toys? Play toys?"). And there he moved from his stroller to a chair, with assistance. After a while he wanted an "eh-bayter" ride so Tom helped him down the hall by duck-waddling behind him with his arms around Quinn's waist and cast. By the time they emerged Quinn was walking with Tom holding his hand. He's not walking unassisted yet, but I don't think it will be long. He can even sit in a restaurant high chair and eat with us, which is terrific.

We had been told to bring button-down shirts two sizes two big to fit over the cast, but they're WAY too small. Turns out that when Dr. Waters got a view of Quinn in action pre-surgery, he decided a little redesign was in order. He built a double-thick cast and attached not one but two bars to hold Quinn's arm up in the right-turn position. The thing is HUGE. Quinn wears a 3T and we brought size 5s. Nana and I went to The Gap today and picked up four size 8s at a great price - buy one, get the second for $5. So Q now has a styling summer wardrobe.

I wonder how much of Quinn's amazing adaptability is due to his personality and how much is due to his special need and his time in the orphanage. In China, he learned to make due with what he was given. and because of his bracial plexus injury, sustained at birth, he invented ways to compensate for an only partially useful right arm. I know all kids are highly adaptable, but this kid is pretty remarkable. I am in awe of him.

Bad night, better day (updated with photos)

Quinn had a tough night. He repeatedly stopped breathing when he cried ("I will hold my breath until this cast is OFF!") and then the heart monitor indicated an irregularity. That meant an EKG - challenging with only a small chest hole for monitoring stickers. Then blood work - even more challenging because of his very deep veins. It took two teams of nurses and two needle sticks to get it right. So neither of us got much sleep.

The only thing that kept Quinn calm was back to back to back playing of the very annoying, "Quack, quack, quack, quack, quack, cock-a-doodle-doo" by The Wiggles. Quinn found it at the beginning of a fairly ancient Barney VHS tape from the hospital library and it was love at first listen. So listen we did, and did, and did, and did.

Today things are a little better. A cardiologist said Quinn likely has a very common early heartbeat in the upper chamber that 9 out of 10 kids grow out of. He's being fitted with a monitor today and will wear it for the next 24 hours. We also had visits from a car seat specialist, and a physical therapist who helped us figure out how to lift Quinn and get him in and out of his stroller. A cast tech cut some off the bottom of his cast because he couldn't sit up straight, and cut some out of the arm pit because it was sticking into him. And that was all before lunch!



We went down to the cafeteria for lunch and Quinn watched the giant ball maze for a long time, and the fish tank for a long time, both of which he loves.


After lunch he played in the activity room with BaBa and NaNa while I filled prescriptions, got travel letters, got release instructions and filled out release paperwork.

He's back to saying he wants to go on a train ride and directing which Barney songs he wants to hear, so he's definitely getting back to normal.

Out of surgery and mad as hell (updated with photos)

Quinn's surgery wasn't until 2:45 p.m., which really worried us because this kid does not like to skip meals. Our strategy was to keep him busy, busy, busy and filled up with apple juice, which was allowed until two hours before surgery.


At 12:30, a bit nervous, we left the Yawkey Family House Here it is - a former frat house that was completely renovated and reopened about 9 months ago in its current form.)



At the hospital, he walked happily into the OR. He had a great time operating the mechanical bed with directions from the awesomely cool anesthesiologist, and played a fun game blowing into a mask, which he didn't realize was the fumes that would knock him out. The nurses were very patient and took their time with him, but when he tried to convince them to put the mask on his toe ("On toe! On toe!"), the anesthesiologist popped the mask on his mouth and off to dreamland he went.

While he was in surgery, we waited in this very nice family area. The surgery lasted 1 hour and 15 minutes, followed by an hour to put on the cast and an hour in the recovery room before we were ushered in. The poor kid woke up immobile, with his arm in a horribly awkward position.



Understandably, he is MAD! Between tears and begging to put his arm down, he did ask for some apple juice (his new passion, discovered this morning when he was on a clear-liquids diet until our noon arrival at the hospital).



He is doing well, all things considered. A nurse was able to scare up a master key to the locked video room, so Barney is making things better, as Barney always does for Quinn. After two doses of morphine, he is finally sleeping and I'm in the fold-out bed beside him.

Dr. Waters said kids who wake up with a "spike" cast are typically mad, mad, mad for a day or two and then adjust quite well once they realize it's not going away. Let's hope that's the case for Quinn!

Surgery and the sniffles

Quinn's shoulder surgery is scheduled for Thursday, April 29 at Boston Children's Hospital. We've been planning it for so long and now it's just about here. Seeing as how it took us months to schedule the surgery, and how we have to travel across the country for it, and how they can't operate on a sick child, we've been doing all we can to keep Quinn healthy. No play areas. Lots of hand-washing. No physical therapy at the regular, grimy place.

So, of course, I started getting sick on Thursday. I've been taking Zicam every four hours - yes, I actually would rather lose my sense of smell than be sick - and drinking tea with Airborne pretty much constantly. I have managed to keep the sore throat and cold at bay, but when I woke up this morning it was pretty clear bronchitis (which I get a lot and can identify immediately upon arrival) was moving it. It's Saturday and my doc is out of town, so I zipped over to the CVS Minute Clinic - turns out, contrary to their advertising, the nurse practitioners are pretty much not allowed to prescribe antibiotics except in very rare, very serious situations. So off to urgent care I went - and luckily managed to find the one location in town that had almost no wait.

Now I'm waiting for the Zithromax to work and trying my best not to touch Quinn. Very confusing to the poor boy, I'm sure. Our fingers are crossed that he stays healthy!