Sunday, April 26, 2009

Massive and Great Update - Part 2(a) - Dr. Boutros Tells Us the Good News

Now its onto some very exciting meetings that we had this week. First, Dr. Boutros (I don’t know why I’ve been calling him DPS for so long, it’s not like he requested anonymity) came to talk to Jamie and I and gave us the best news we could have asked for – we’re going home! Second, we finally met with Jen Griffin, who, while she didn’t contract meningitis, lost both of her legs below the knee like Jamie, but unlike Jamie, Jen lost all of her digits on both hands. Jamie was absolutely blown away by everything Jen was able to do and peppered her with question after question. This meeting will certainly be the first of many for our families and Jen and Jamie are destined to become close friends. This, I know. I’m sorry that the part about Dr. Boutros is long, but there’s too many details to cover, so I have to put it all in. Sorry.

Tuesday 6pm – Dr. Boutros tells us that the left hand looks great, then says to go home

As Peter Gabriel wrote in the song, Solsbury Hill:

Today I don’t need a replacement/
I’ll tell them what the smile on my face meant/
My heart going Boom Boom Boom/
“Hey” I said, “You can keep my things, they’ve come to take me home!”

[This isn’t true. You can’t keep our things, but WE ARE GOING HOME SUNDAY!]

I’m pretty sure we learned this on Tuesday. It must have been Tuesday, because Jamie and I were watching Lord of the Rings: The Two Towers on our projection TV. Jamie was sitting in her wheelchair and had been doing so for a few hours; she’s way more tolerant of the wheelchair than she used to be, and though her legs get tired from hanging there, now that we started reclining the back of the wheelchair a bit, she’s more comfortable relaxing for more than the required two hours at a time. Pretty great.

So, Dr. Boutros comes into the room where Jamie and I are chilling. Mom is out getting her weekly break from the hospital, so she wasn’t able to enjoy the moment with me and Jaime. Dr. Boutros starts his examination of Jamie’s hands with her left hand. Her left hand had been part of the Flap Procedure, so it has undergone more surgeries than the other one. It’s also Jamie’s “bad hand”; she has parts of two digits on her right hand and doesn’t have any on her left hand. As it stands now, Jamie’s left hand looks like a mitten. When Dr. Boutros unwrapped the left hand, he asked Jamie to move her thumb around, which she did despite the fact that she still had two pins sticking out of her thumb. He was visibly impressed with his work. Then he smiled and said “OK, let’s take those pins out and see how well you can move.” Jamie said “Right now?” Dr. Boutros smiled, “Yep.”

It can hardly be understated how little Jamie likes painful things like, say, removing pins from her hand. She had practically demanded that we remove the pins in the OR. We said no; can’t have surgery for everything. So, when Dr. Boutros suggested that we take out the pins right now and without any anesthesia or numbing Jamie’s hands, I was shocked that Jamie was pretty cool with the idea. So, Dr. Boutros slowly tugged, twisted and turned the pins. He pulled, he twisted, he pulled; miraculously, Jamie hardly flinched. We both stared as he eventually pulled a shiny four-inch pin out of her hand, near her thumb. [For some reason, I’m reminded of December 6, when Jamie and I watched the plastic surgeon at Seton squeeze liquefied muscle out of Jamie’s palm, and he told us she’d lose both hands at the wrist]. He told us that the pin had gone through two bones, spanning the length of her palm. Yikes, we both said. Then he pulled the other one out; some pain, but no tears or argument. Very easy. Makes me optimistic that other things (removing the feeding tube, as I’ll discuss in a later section) will be as painless and as easy. “You don’t want to keep these pins, do you?” Jamie and I answered, “No, why would we want to do that?” Boutros said “I don’t know, some people just want to hold onto these things.” He threw each of the four-inch pins in the medical trash bin. An hour later when we called mom, she asks, “Did you keep the pins?”

So, Dr. Boutros asks Jamie to move her left thumb again. Jamie starts to wiggle that thing all over the place. She is beaming. So is Dr. Boutros. I start beaming too, since that’s apparently the thing to do. Dr. Boutros is very obviously pleased with his work and he asks Jamie to hold a pen with her thumb. He gives her his pen, a big expensive looking thing. Jamie fumbles with it and it falls out. Unphased, I give her one of my normal pens and she holds it in her hand just fine. We’re all smiling ear-to-ear. Just a big love-fest.

“I can’t even begin to tell you how great this is.” Dr. Butros begins. “For Jamie to be holding a pen with her left hand is incredible. I haven’t even done any shaping on this hand. This is amazing! I couldn’t have asked for anything this good to happen…” He’s clearly thinking, because he has his hand on his chin. He tells us that, given how great this turned out, we may have a lot more options than he previously anticipated. We ask what he’s thinking about and he tells us that “Oh, I’m not sure we need to discuss it right now… very exciting, very exciting…” I’m pretty curious, and frankly, we’d received enough good news for now, he can save this for later if he wants.

Then Dr. Boutros looks at Jamie’s right hand. He takes a look at her hand, the graft on her right thumb that has almost fully taken, then takes a look at her two remaining digits. Jamie’s index and middle fingers have some slight length remaining, and part of her bone is sticking out of the top of each. Dr. Boutros takes a step back and says everything looks great. Then he starts talking about something else, and got interrupted by Jamie, who asked the only question that remained:
“Now what?”
He’s smiling again. Cheshire cat sized.
“Now you get to go home.”
“What do you mean, go home?” Jamie and I almost say in unison.

According to Dr. Boutros, Jamie’s hand right hand is perfectly healthy enough for her to enter a rehab facility. He said that we don’t have any restrictions on the things we can do. Jamie can and should be putting pressure on her palm now. The most important thing is for us to begin rehabilitation and get Jamie walking again as soon as possible. His office and the folks at St. David’s in Austin will coordinate to discuss the best time for Jamie to take a break in her rehabilitation to come get the flap procedure done. She’ll have to have her hand sutured to her side for up to two weeks, and since she can’t do rehab like that, it makes sense. Also, he says, a healthy, active person will heal much better than someone in a hospital. Also, he points out, hospitals suck and nothing makes someone feel as good as being home and getting some puppy and kitty loving.

He explained that we can simply come back to Houston when it’s time to perform the flap surgery that her right hand still requires. While we’re talking about the Right Hand Flap Surgery, he said that, as a result, Jamie’s right hand will look worse after the surgery until he shapes it in a subsequent surgery. We tell him that as long as we’re not losing any length, we could care less about how the unfinished product looks and we won’t be discouraged by how the post-flap hand looks. Currently, the left hand, which has undergone its flap procedure, has a big mass of extra skin sitting on top of Jamie’s palm. So, I can imagine how a lump of extra skin will look on a hand that has digits on it. As Dr. Boutros said, it’d look like there are several little mushroom caps on her hand. No big deal.

Back to the matter at hand (wink):
Jamie/Nick – “Wait, we aren’t covering the bones before we leave? What if we hurt the bones?”
Boutros – “There isn’t anything you can do to the bones. The exposed parts are dead; that’ll have to go anyway. It’s not like you can do anything to hurt them.”
J/N – So, what’s dead is dead? [I HATE that phrase. I hate it more than the phrase “let’s just be friends”, my formerly most hated phrase]
B – Yep. It’s fine, you can do anything you want.
J/N – There’s no concern about infection?
B – Just keep it clean, you’ll be fine.
J/N – How? Can we pet the animals?
B – Soap and water should be fine and yes, you can pet the animals. Just keep it clean.

Jamie and I were blown away. We’d thought that we wouldn’t be going to Austin until she had another flap surgery, and even if we wouldn’t be undergoing another medical procedure, we were pretty certain that Dr. Boutros and Jamie’s hands would be holding us up at the end. So, now the only things keeping us from Austin were the removal of Jamie’s feeding tube (piece of cake) and avoiding any regression in her “numbers” or infection.

It was a pretty emotional scene, to say the least. The emotion, though, was elation. We’re finally leaving. We decided that it’d be best to target Sunday, May 3rd as the day we get to leave for Austin. Then, we’ll simply drive back in my car to Houston for another few surgeries with Dr. Boutros. Sounds pretty simple, huh? So, yeah, that’s the big news – First, we’re coming home. Second, Jamie’s left hand can grip a pen and may prove far more useful than we’d ever imagined. The right hand, he said, will be far better than the left.

So, that’s about it… next up, I’ll write about Jen Griffin coming to visit, and we witness the beginning of a lifelong relationship. Thanks for reading to the end of this long post, and for putting up with my delay in getting this post out there.

3 comments:

Anonymous said...

Praise God...continued blessings!

Unknown said...

This is so amazing! Thank you ,God, for bringing Jamie home! I have the biggest knot in my throat -- so excited! I can't wait to see you!

Emily Brill said...

i cant stop smiling!!! i am so happy for Jamie and the hole family!! wow, seriously this is the most amazing news i have heard!