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Boston Marathon victim still fighting to keep leg months after bombing: 'I could not have it tomorrow'

Eric Kayne

Boston Marathon survivor Rebekah Gregory, who has undergone 13 surgeries to save her left leg. She was medivaced to Houston, where she is from, two weeks ago.

RICHMOND, Texas – After 13 surgeries aimed at saving her lower left leg, including one that used live back muscle to cover an open and infected wound, a mother seriously hurt in the Boston Marathon bombings has managed to keep that injured limb – for now.

But the days are full of pain and exhaustion for Rebekah Gregory, 26, who is believed to have been the last patient connected to the Boston bombings released from hospital when she was discharged on June 10. She spent 56 days total in hospitals in Boston and Houston, near her home.

Though tales of triumph and comeback abound among the 275 injured in the April 15 bombings on the city's famed road race, some victims like Gregory have a long and uncertain path ahead -- one that does not guarantee full recovery.

“I am kind of just taking it one day at a time because we don't really know what's going to happen,” Gregory said Thursday as she sat in bed and an IV drip fed antibiotics into her body to keep at bay a bone infection – first detected around the fourth week of her recovery – that could force amputation of her limb. “I have a leg today, but I could not have it tomorrow.”

Gregory's case is rare even among the more seriously wounded: while amputees are moving ahead with prosthesis training and others are recovering in rehabilitation, she is stuck many steps back, wondering what will happen with her leg.

Doctors have told her at least ten times that they would need to amputate, but then would quickly walk back as her condition changed. One time, they asked her to make the call.

“How do you make that decision? Because I could say, 'Okay, yeah this hurts really bad,” she said, “ … and all these other people that didn't have the choice to have the amputation are out and they're being fitted for their prosthetics and going on about their lives.”

“But how do you make that decision to just say, 'Okay, just take it?'” she said. “At that point, I still didn't feel like that was the way to go. So at least now if I lose my leg tomorrow or next week, I can at least say I tried to keep it.”

A catalog of injuries

Gregory's injuries are primarily to her left side and include: losses of a lot of soft tissue to her foot and in what she calls a series of “craters” going down her leg, the destruction of about 30 percent of her fibula bone, fractures to her tibia and hand, and multiple fractures to her foot as well as the loss of part of her fourth and fifth metatarsals.

She was medically evacuated to Houston after nearly 40 days in Boston to continue her care near home.

When she got there, doctors at Memorial Hermann-Texas Medical Center tended to a pressing matter: irrigating and cleaning the infected open wound on her foot that, if not remedied, could lead to amputation.

After doing that, they removed a small piece of muscle from her back, with a blood vessel attached, to connect to her foot and a corresponding artery and vein. They placed skin grafts from her thigh on top of it, said Dr. Emmanuel Melissinos, a microsurgeon who performed the procedure.

So far, Gregory has responded well to treatment and her recovery is in line with doctors' expectations, he said. He believes the chances of amputation are remote but possible, especially if the six weeks of antibiotics doesn't squelch the infection.

That recovery is now happening at the home of Gregory's parents, which they moved into the weekend of the bombing. Her mom, Tina, and dad, Tim, packed up her house in Houston and moved her and her son Noah, 5, in with them and her two younger sisters.

Back home

Though Gregory was anxious to get out of the hospital, the transition hasn't been easy.

Eric Kayne

Michael Umana, RN, performs wound care on Boston Marathon survivor Rebekah Gregory, who has undergone 13 surgeries to save her left leg.

Every move she makes must be calculated in advance. That's because she can't bear weight on her leg and she has to keep her left foot raised above her heart for at least 50 minutes of every hour to protect the transplanted muscle and skin graft.

“My leg hurts really bad every day, all day,” she said. “It's a constant pain.”

Going to the bathroom, steps away from her bedroom, is a workout. It entails her getting in the wheelchair, rolling to the door and then using a walker.

“That process alone, I mean, I could take a nap for three hours afterwards. ... It's very difficult right now,” she said as she laid in bed with her left foot propped up on three pillows: “What you see is what I do.”

But that's only part of the adjustment.

“It's not only the physical part of it but it's just the getting back to normal routine as best as I can,” she said, noting the humdrum sounds of everyday life made her anxious.

“Noises really bother me right now ... especially loud noises, I know that Noah's the same way,” she added, noting both her eardrums were ruptured in the blast. “It sends your body into freakout mode … because that day is very much relived. It's like it happened yesterday.”

That day for Gregory was the culmination of what up to then had been a perfect weekend. It began on Friday with her birthday celebration in Rochester, N.Y., at the home of her boyfriend, Pete DiMartino.

The couple, Noah, DiMartino's sister and his parents, and others then traveled to Boston to watch his mother compete in the marathon. They were at the finish line when the first bomb went off.

“All of a sudden, everything was gray,” she said. “I was on the pavement and I couldn't move my body.”

Her main concern was Noah. “Out of all the people screaming and crying, and all the commotion going on around us, I could hear his little voice saying, 'Momma, momma, momma.'”

DiMartino's aunt whisked Noah up and brought him to Gregory. Noah had been struck by shrapnel in the back of his head, where he now has a bald patch, and straight to the bone on his right leg, where he has a long scar that he has dubbed the “swordfish.” He was in the hospital for five days.

Bystanders wrapped Gregory in jackets and she was rushed to the hospital in an ambulance with another victim. She could hear the medics saying, “We have an amputee,” and thought they were speaking about her. When she gained consciousness, her parents had to show her a photo of her leg to convince her that she still had it.

“I'm just hoping that I'll be able to keep it,” she said. “But if not, my leg is not my life.”

The costs of recovery

Complicating matters for Gregory, who had been working as an account executive at a corporate housing relocation company, is that her health insurance expired on her birthday, just two days before the attacks.

She had been on her parents' plan and had planned quickly to apply for the one provided by her work, but instead is paying $400 a month for Cobra coverage on top of the costs that her insurance doesn't cover.

Doctors have told her a full recovery could take up to 16 months and she will likely have more surgeries. To help with the medical bills, she applied for the One Fund set up by authorities in Massachusetts to aid the marathon victims.

"It would make a huge difference," she said. "There's a lot. I mean right now, home health (care from a practitioner) and all of the medicines I am on. ... I have $1,000 at least worth of prescriptions a month, and a lot that insurance doesn't cover."

Taking it slow

Eric Kayne

Boston Marathon attack survivor Rebekah Gregory, with her son Noah. She has faced the possibility of amputation many times, and is resigned to the fact that may be a possibility. She says her life is not about her leg and is just happy to be alive.

Dr. Edward Ken Rodriguez, one of the doctors who treated Gregory in Boston at Beth Israel Deaconess Medical Center, said he believed Gregory was the most severely injured marathon patient at the hospital who had kept such a wounded limb.

He was very optimistic about her prospects going forward with her leg but cautioned: “When you salvage a limb like that, it's never a normal limb. What's hard to predict is the level of chronic pain she will have in the future, how functional the limb will be, how strong it will be.”

“We understand that you can go through many, many surgeries and end up with a very unsatisfying limb, a limb with chronic pain. So it's not unusual for patients who have even started down the course of salvage (to) have changed their minds after a few months,” he added.

At least 15 of the people wounded in the marathon had amputations. Gregory's case was an example of the debate and conflict between salvage and amputation that has been going on for many years, said Rodriguez, the hospital's chief of orthopedic trauma.

“Salvage is a very time intensive, slow first phase. It could be a good year before you get to the point where you have a bit of a picture of how it's going to turn out,” he said.

“She could do very well with an amputation, but she could also do very well with her own leg,”  he added. “This is the uncertainty and how long a road you want to ride before you find out.”

Gregory plans to ride that road out for the time being. She is also mindful that she and her son need also to recover from the emotional scars and lamented that Noah “remembers too much” from that day.

He doesn't want them to leave the house and brings his mom breakfast daily: one day it was soggy Froot Loops, another it was toast slathered with an inch thick of jelly.

“I take care of my momma and she takes care of me,” he said.

Gregory maintained a positive attitude and a constant smile while talking about some of their darkest days. She keeps up with her boyfriend, DiMartino, who was also injured and is recovering at home, by video chatting online.

The experience has made her “appreciate everything just a little bit more,” she said.

"I'm grateful for every single day that comes because it's just reinforced what I've known all along -- that we don't have as much time as we think we do.”

How to help: To donate to Gregory, her employer set up this fund: http://corporates.com/rebekah/

Related:

Full coverage of the Boston Marathon tragedy on NBCNews.com