Mother Warriors, Monica appears on Oprah

All of us here at the "Bionic Mom" blog are familiar with the story of Monica Sprague. Now Oprah has brought Sepsis to the front of everyone else's minds. Monica appeared with Jenny McCarthy today, and Suzanne was fortunate enough to be home to see it. Sue said she was glad to to see how strong Monica looked. She was glad that Monica was up and walking and had such high energy. Since removing the staples in her right leg, she met with her prosthetist about measuring for the left leg. Nothing more to report right now.

How It's Made

Now that Suzanne has had the staples removed, from her right leg, she is moving even closer to her prosthetic fitting appointment. None has been set, because there is still significant healing to be done at the incision site. But when the surgeon has determined the skin to be strong enough, she will proceed. The left leg may be fitted soon though. Below I am including a video from the TV series "How It's Made." The first segment in the video features the prosthetic manufacturing process. It is oversimplified, but still interesting to watch.

One more down...

Suzanne's operation yesterday was successful. During the three hour surgery, the doctors were able to shape the right leg to properly fit in a prosthetic socket. The final decision will be determined once the staples have been removed and the grafted skin from the earlier surgeries is tested in the prosthetics. Because the grafted skin is not as durable as natural skin, there may need to be future, skin stretching, plastic surgery to strengthen the ends of the limbs for shear strength. Info about grafted skin can be found here (Note graphic images included with article). Sue is expected to be in the hospital for two to three more nights, to manage the pain and wound from the surgery. She should have the staples out in about two weeks, once the wound closes completely and preliminary prosthetic fitting can follow within weeks of that.

Olympic Amputees

We are all aware of Oscar, but were you aware of Natalie or Natalia? Natalie competed in Beijing for South Africa, in distance swimming. Natalia is already a Paralympics ping pong medalist, competing for Poland in Beijing this year. These are just two more examples of how athleticism and sportsmanship know no disability. But for Natalia and Natalia, nobody is complaining that they have a mechanical advantage.

Sepsis in the News

This video was taken from the Wall Street Journal's, August 14th, online edition. A lot of interesting information is included in both the video and the linked page. Please click on the play button and wait for the "Sponsor Message" to complete.

VIDEO DISABLED BY WSJ

UPDATE: Here is another WSJ article from August 27th, focusing on Sepsis

Next Surgery Date Set

Suzanne’s next surgery date has just been set. The revision of her left leg has been healing successfully, while the right leg has largely been ignored since she was released from the hospital in February. This is in part due to the desire for continued physical and occupational therapy but also to allow some sores to heal. Because she had a staph infection on the end of her right leg, the surgeons did not want to introduce this to the operating room. Now that she has recovered from the Staph, the revision for sculpting can proceed. The date has been set for Tuesday, August 26th – which is still a month away. Hopefully this will be the last leg surgery needed before proceeding to prosthetics. However, the surgeon has indicated that due to the shorter length on the right, he may need to do two small surgeries instead.

Britain's "Beauty Season"

An article found here introduces a new show in the UK based on the "next top model" franchise. The show features eight models who have some sort or severe disability. Says the article "The show's creators hoped the series would challenge pre-conceived notions of beauty and raise disability awareness." I agree that it will challenge preconceived notions about disability, but I'm not convinced it isn't just a ratings grab. (UPDATE: Series Complete - Official Website HERE)

Forever Friends

This weekend some of Suzanne's friends, from her college sorority, trekked down from New Jersey to pay a visit to her and the baby. They all took time from their own hectic lives to carpool down to Virginia to be there for Suzanne. They can be seen here with Suzanne...
Front Row: Kris Anne, Sally and Lori. Back Row: Suzanne, Denise, Christine (Holding Gabby).
This is just another example of how wonderful her family and friends have been through the whole ordeal. Suzanne is lucky to have such good people in her life.



Suzanne would also like to express her sadness at the departure of her home care occupational therapist, Carly, who has recently relocated out of the area and will not be able to continue participating in her recovery. Carly had been assisting Suzanne twice a week to regain function in her hands. Thank you Carly. Keep in touch!

Home Again

Suzanne returned home on Friday, as was originally planned. Before leaving she took a couple photos with some of the nurses and staff who made her stay so comfortable, all those weeks. They were all glad to see her progress and look forward to her self-propelled return visit. Here are some of them: Ron, one of her physical therapists, who has a wonderfully cheerful disposition that always keeps Suzanne going, and Karen, her case manager, who is a life-saver with all of Sue's paperwork (L). Aubrey, one of Suzanne's most dedicated nurses. Aubrey just got married and brought in her wedding photos to share with Sue. Congrats Aubrey! (R). And Marie, one of the aides who frequently switched rooms to be with Suzanne as often as possible (L). Sue wanted to recognize here some of the people who have been spending countless hours with her. These are only a few of many, so we plan to post more people as we go on. For those of you who haven't seen Sue lately, how do you like the haircut?

One step closer...

Suzanne came out of the operation with flying colors. She spent several hours recovering in the PACU, before moving back to the 3E wing, with the same nurses from her previous stay. There was a parade of hugs and well wishes from the nurses and technicians who became an extended family over the winter months. Suzanne said it was “like a homecoming” and she was glad that she was with the nurses whom she knows.
The operation focused on the shape and structure of Suzanne's left leg. The two bones, tibia and fibula, had fused together during her original hospital stay, probably due to her increased metabolism for healing and scarring. By waiting until she has returned to homeostasis, the chances of a repeat fuse are unlikely. Dr. Jordan has indicated he would like to address her right leg in about 4 weeks. But overall, today was a success. She will stay for 2 to 3 nights for observation before returning home for further recovery.

Surgery Tomorrow

This morning, Suzanne will be heading to the WHC for blood work, in preparation of her surgery tomorrow. The operation is going to focus on shaping her left leg, but may include the right. However, they are not scheduled to work on her hands. She will have an overnight stay to monitor her vitals, but she’ll be home on Wednesday. Suzanne is, understandably, not looking forward to the operation but is anxious to have them completed.

ESPN Magazine Article

Last week's issue of the ESPN Magazine featured a story about athletes who have prosthetic limbs. They get into an in depth discussion about whether some may give their users advantages over other "able bodied" athletes. The man to the right, Alex Zanardi, had both of his legs amputated after a crash during one of his races. I look forward to Suzanne driving again. She has a meeting with the hand specialist tomorrow, to go over the results from last week. But the next leg operation is still pending. Other than that, Happy Mother's Day!

On her Nerves

Suzanne had a second nerve conduction velocity test performed yesterday. By sending low voltage (but highly uncomfortable) electrical current through her nerves, the device could read the speed at which the signal traveled. Her doctor tested the radial, ulnar and median nerves. When compared to her first test, where there was high signal loss, the results yesterday showed slightly improved signal transmissions across the dense scar tissue of her right arm. He was cautiously optimistic with the results. This does not imply that the nerve damage has been repaired, or that further function will be gained without invasive operations, but she may be on the right course to increased muscle function in her hand.

Counting Down

The six weeks were up on Wednesday the 16^th so Suzanne met with her surgeon and rehab specialist at the WHC and NRH. The consensus was that she should be ready to proceed with her next set of operations in a couple of weeks. For a change of scenery, while awaiting the next phase, Bob & Nella, Sue, Gabby & Pat piled into their cars and drove two days to Wisconsin. Sue has been relaxing at her parents’ house, with Gabby, for the last week and will return home next weekend. The next operations will be preparing the legs for a proper fit, and will be a series of small outpatient procedures, or have a single overnight stay. The expected time-line is three to four months before she is able to be measured for the new legs. In the meantime she is continuing with her resistance training and weight bearing exercises.

Gabby's First Easter

Suzanne climbed into the wheelchair to go to Kiddie Kandids for Gabby's 5 month portrait. After a couple of weeks in the house, with only visits to the various doctors, it's good to get her out and back into mainstream society. She is adjusting well and is looking forward to visiting with friends very soon.

Here's one of the photos we took today. The doll was one of the first gifts we received after finding out Suzanne was having a girl. Nella found a matching outfit and we thought it would be great to put them together. Gabby is thriving, thanks to constant attention from mommy and grandma. Sadly, next week she gets another series of shots; I'm glad we took the portrait first.

Prosthetist

Wednesday afternoon Suzanne met with a prosthetist to discuss possibly fitting her for temporary legs, in an effort to move the progress forward at a faster rate. However, due to the scarring and weak skin on the lower legs, he would like to wait until the future shaping operations have been completed before fitting. The risk would be in tearing the skin or wounds moving her backwards instead of ahead. He showed us a prosthetic leg with a quick release socket mechanism, which will be easy to operate. It involves a silicone sleeve with a peg on the bottom. Once the sleeve it worn, the new leg mechanically fastens to the peg. An image can be seen here on Corbis, but it is right protected and I don’t want to get anyone upset.

On Monday, Suzanne had nerve conduction testing performed on her right arm. There is nerve damage or obstruction in the forearm, which is preventing her from using her hand effectively. The test electrically stimulated the nerves and muscles for abnormal responses. It yielded informative but disappointing results. It didn’t reveal the cause of the signal loss, but located where the good nerves end and the damage begins. The hand specialist will review the results before we return to Baltimore to discuss the results with the hand specialist.

Other than that, the game plan is to continue waiting the remaining weeks until meeting with the surgeon about reshaping the legs.

Hand Center

Today Suzanne met with a hand specialist to discuss the next course of action on her upper extremities. He would like to wait until Sue has had her prosthetics fitted prior to doing any work on her hands. She will need to keep the strength she has when using walking devices. But there are many things he can do to increase mobility and function, over time. Sue will have some nerve stimulus testing performed soon, to see where they will need to start. However, this was expected, based upon our meeting on Thursday with her surgeon at WHC. His plan is for Sue to come back in six weeks to see if her legs scars and skin are healed enough to begin further sculpting. But for right now, he wants her home, for the six weeks.

Reunited

Here we are; the happy family. It has been a long time since we have been photographed together and we are glad to present our strong and vibrant Suzanne. Sue spent much of this weekend resting, but today she had an opportunity to read all of your comments posted here on the blog. She’s overwhelmed by your constant support. Tomorrow she restarts her therapy to build the necessary strength for the future surgeries. Thursday, her surgeon will assess her legs and devise a game-plan. And the following Monday we are scheduled for Baltimore to look at her hands. Much progress has been made, but there is still much to do…

Homeward Bound

Suzanne is having her last therapy session, at the NRH, this morning. She'll be discharged from the hospital in the early afternoon. Sue will be receiving at-home physical and occupational therapy 4-5 days per week, as well as nursing visits for the next 6 weeks before re-evaluation, prior to the next surgery on her legs. The goal is to build muscle and strength in preparation for the prosthetic fitting. There is also a pending consult with a hand specialist in Baltimore, to see if anything can be done there. However, the all around good news has everyone in high spirits and we look forward to having us all under one roof again. Other than being with the baby, Sue can't wait to sleep in her own bed again and have "real" food.

Day Pass

Yesterday, Suzanne's doctor allowed her the opportunity to come home for the day. The intention was to present the real-world obstacles and daily challenges she will be encountering when she returns home next week. It will allow her to focus her efforts in this final week at the NRH. By working with countertops, baths, the bed, crib and such she was able to practice navigating these obstacles in and out of the wheelchair. One major problem we discovered is pushing the chair through the heavy carpet pile. With the assistance of Joe, Sue completed her daily exercises at the house. Along with him, were both sets of our parents and the baby for the emotional temporary homecoming. I regretted having to drive her back to the hospital for her 8PM curfew. However the end is nigh.

Rehab

It has been a week and a half since moving to the NRH. Suzanne has been spending about 3 hours per day doing intense physical therapy. This includes weighted leg lifts, stair climbing, balance exercises and transfers in and out of the chair. The goal is to improve her mobility and independence upon returning home. We have just heard that this should be at the end of the month. We anticipate she will be home for a few months before returning for further operations in preparation for prosthetics. Being out of the hospital environment will allow her to eat better food, spend more time with the baby (and me), and be outdoors while preparing mentally for life ahead. We’re all very excited about the news and look forward to updating you soon.

Monica

Several people sent me links to this article today. Monica Sprague, of the Boston area, recently had to deal with a similar situation as Suzanne. The Boston Globe Magazine has a multi-part feature, focusing on the ordeal. I feel blessed that Suzanne has been fortunate enough to have had her hands saved. I'm still digesting the article, but you can hear about it in Monica's own words with this video. There's another blog here.

All Moved In

Yesterday, around 5PM, a nurse wheeled Suzanne down the hall and through the skywalk which connects her floor in the hospital to the NRH. The delay in the move was due to ongoing battles with pain, Staph and C-Diff, as the NRH is not equipped to handle patients with those ailments, who are still connected to the IV. Today marks the beginning of her intense physical therapy, to gain much needed upper body strength. It will be needed to transfer herself in and out of a chair and later as support with walking devices. But that will come later. We expect Sue to be at the NRH for about a month, before going home for further outpatient recovery.

Winning Design(s)

We had a difficult time deciding what design we liked better. Suzanne ultimately decided on the blue and orange one (right) because it was vibrant and lively. Therefore that is considered our "winning" design. The designer captured everything that we were going for and must be commended.


The other design we liked, and the vote winner among the other graphic artists was the one, with the "star people" (left). It was also well designed and captured a feeling of hope. Therefore, we asked if we could use the design, in addition to the first. Fortunately we can!


Unfortunately, we cannot pin down a date until Suzanne has had an opportunity to get out of the NRH and on with her life. Nor do we know when her future surgeries will take place. Of course we will keep you posted. However, in the meantime, if you would like to wear your support for Suzanne, visit the Official Shops: Design 1 & Design 2 are both available.

Walk with Suz T-Shirts

There is nothing significant to report about Suzanne's status. She is still recovering from the last surgery, so she can be moved over to the NRH. The surgeons have been visiting her on a daily basis to check her wounds and see if she is ready. Her spirits are up, and she is looking forward to leaving the hospital environment, for some intense physical therapy.



When I made the post on January 10th, about the Walk With Suz 5k, I received a lot of responses, both by email and comments on this page. Upon further thought, and discussion with Suz, we decided that it would be a fun event, in a year or so - when she is walking again. Of course we don't have a date yet, but I found a route on MapMyRun.com which is a good place to start. I think it would be better to start/end at the FDR memorial and do a similar loop to that one.



I also visited Worth1000.com and asked their talented designers to come up with some t-shirt designs, for the future event. They came up with over 30 Entries! Please have a look at all 4 pages of designs and let me know what design you like the best. I only have until next Friday to select the winning design. I have a few favorites already. But it will be tough to decide. They are all so well done. I would like to hear what you think.

Closer to Moving

Suzanne had another surgery this morning; everything went well. Today the surgeons separated her left index and middle fingers from each other, where they had attached them to increase vascular tissue mass. The new wounds were grafted closed with some skin donated from her thigh. Additionally, they completed closing the bottom of her legs. Pending negative testing for C-diff (negative is good), she should be ready to move over to the NRH when these new grafts heal. C-diff, Clostridium difficile, has been a reoccurring nuisance for the last month. It is a common hospital opportunist whose origins have nothing to do with the original infection.

When Sue does move from the recovery ward to the rehab hospital, the goal will be for her to strengthen herself mentally and physically to prepare for wheelchair living. She will not be ready for prosthetics for some time. She will still need future surgeries for her right hand and to sculpt her legs for proper fit and comfort. Additionally she will need time to build her upper body strength and hand function, so she can support herself when taking those first steps.

Just a side note; Oscar Pistorius was just denied the opportunity to run in the Beijing Olympics because he has an unfair advantage. I look forward to when Suzanne will be in such a circumstance! For equal say, here’s the NY Times and Fox coverage of the story.

Walk with Suz

The image to the right was taken from a doctor's website. As you can see from the image, it is a woman who has had a a bi-lateral (both sides) transtibial (below the knees) amputation. This is the situation which Suzanne is now experiencing.
This woman has chosen to wear the prosthetics which look less like actual legs and feature the support shafts. The other option would be cosmetically similar legs. Personal taste may have something to do with choices, as may insurance. I'm not sure which route we will end up taking.

Having your own knees, when learning to walk on prosthetics, is superior to above the knee amputation. Therefore, once her arm strength returns, I feel, it will be only a matter of time before she is walking again. Maybe I should plan a "Walk with Suz 5k?"

Surgery Success

Suzanne came out of surgery this evening with flying colors. Today they attached her left index and middle fingers, in an attempt to regrow some vascular tissue on the index finger. They successfully completed this operation on the left thumb a couple of weeks ago. They have to create vascular tissue because you cannot keep skin alive if there isn't a blood supply. A "flap" of donor tissue is partially moved from one finger to the other, filling the void left by removing the dead tissue on the recipient finger. If everything is as successful as last time, they will disconnect the two fingers and both will be fine. The chief surgeon for Suz's case has indicated that, after a few more grafts, she can move to the rehab center. However, each graft takes a couple weeks to heal before it can be considered closed. To date, her legs have remained wrapped. And once she is there, and has had an opportunity to strengthen her legs, she will be brought back to surgery to sculpt the legs for the ideal fit inside the prosthetics. But over all, a good night.

Surgery Tomorrow

Monday afternoon, Suzanne will have another surgery. She has been having surgeries on average once a week, since the initial hospitalization. The earlier surgeries took 3-4 hours each because major de/re-construction was being undertaken. As the surgeries have progressed, they have been taking less time. Last week's surgery only took 1.5 hours and she was alert when she came out of the OR. This one is going to be focused on debridement of some tissue on her legs which have not taken 100%. And they will look at her hands as well. This was the same thing the told me last week, and the week before. Unfortunately, they don't exactly know what they're going to do until they see it.
We were able to bring the baby in today to see Suzanne. Gabby was cooing and smiling and standing in my lap. Sue got to hold her for a little while, but as the baby was fidgety, she was difficult to hold. It is nice to have her so close to the hospital at Bob & Nell's temporary apartment, so we can bring her in more frequently. They have been taking care of her on a regular basis, with my parents coming in on the weekends to give them a break. I know I couldn't do it without all of their support.

Gabby's Christmas Photo

Here she is! For those of you who didn't see the Christmas photos, this is one of the set. We had the large one framed for Suzanne's room.