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.

Motivational Propaganda

I was looking online for a representational image which I can use to help motivate Suzanne through her pending rehabilitation. As she is currently bedridden, and not yet independently mobile, her first step will be to get into a wheelchair. It will be a miraculous day when this happens. However, that is going to be but a temporary pit stop, en route to walking again on her own. I looked for one with the universal "no" sign. But I ended up quickly making that one in photoshop. However the one which looks like the traditional evolution image, is also good. That one came from here. It is for paralyzed patients, but I think the image is fitting.

If you come up with your own, send them our way.

Sent December 4th 2007

I just want to touch base with you and give you a quick head's up. Suzanne was just last night moved out of the ICU and into a regular room. This is the biggest step forward she's made in the last few weeks. Her anxiety for the move is understandable, as she will go from a 2-1 nursing ratio to 6 or 8 or more to 1. However, they wouldn't have made the move had she not been ready.

Her physical therapy yesterday was quite extensive. Her range of motion in both her arms and legs is greatly improving. Although her right wrist and fingers are still quite swollen and hard to control, she is leaps ahead of where she was. There are still many more small surgeries to be completed to finish closing up the arms and legs, to graft some skin and to make her legs comfortable in the pending prosthetics. But for all accounts, she's doing well. For a while she was going back and forth with infections and high white blood cell counts, some grafts that didn't take and generally slow progress. If she could only see how far she's come, she would be amazed. We all are, but in her limited view she can't see her accomplishments, only her present inability to hold a fork or make a fist. Not to mention the fact she can't get out of bed.

But over the next few months the surgeons will be finishing up their tasks and the physical therapists will be working her muscles. Before you know it, she'll be walking out of there. There are some future moves planned. One move will be to the National Rehabilitation Hospital in DC and potentially another to the Curtis National Hand Center in Baltimore. The NRH handles many of the returning soldiers, who have prosthetic rehab to complete. And CNHC would be to do some reconstruction of her forearm and hand muscles, to improve grasping and dexterity. But that is further down the line.

I also want to send thanks to everyone for the cards and gifts for Suzanne and Gabby. They are all very much appreciated. The cards have been lining the walls in Suzanne's room. I look forward to getting her online and responding to everyone's email and letters soon.

For now…

Love,

Patrick

Sent November 9th 2007, to my family

I have been sitting on two boxes of baby announcements for weeks and just can't bear to send them out at a time like this. Suzanne and I have been blessed with a beautiful baby girl, perfect in every way. But instead of celebrating Gabby's little milestones, we're spending every waking moment at the hospital trying to make sense of everything that's happening.

I would now like to update you with the latest news, as it has been difficult to disseminate the rapidly changing information. Suzanne's infection is pretty much complete and she's now dealing with the after effects of the toxins. The bacterium was identified as Streptococcus pyogenes. This bacterium, similar to many others like it, produces several types of toxins which are more harmful than the infection itself. Here is a concise summary I found online:

"Streptococcal toxic shock syndrome can happen following a streptococcus infection in the body, most often a skin infection or an infected wound. ...The person's blood pressure drops dangerously low, and he or she may have fever, dizziness, confusion, difficulty breathing, and a weak and rapid pulse. The skin may be pale, cool, and moist, and there may be a blotchy rash that sometimes peels. The area around an infected wound can become swollen, red, and have areas of severely damaged or dying flesh. The liver and kidneys may begin to fail, and bleeding problems may develop"

As a result of the infection described above, Suzanne was given several very strong vasoconstrictors (Pressors) to increase blood pressure to the vital organs. The effect is that the limbs receive much less blood, and therefore oxygen, than the core. As a result, they become blue, and eventually necrotic. It is the same as what happens to people who get frostbite. Unfortunately, the lower legs were void of oxygen for too long and have just today been amputated. The dead and dying tissue needed to be removed to prevent the spread of future infections. Additionally, her arms are also in jeopardy. The exact word the surgeon used was "iffy." I saw the open wounds on her legs prior to the operation and was shocked to see the extent of the damage. I was able to see one of her arms as well and was not encouraged.

From all reports from both the local medical staffs at both hospitals, as well as personal friends in the medical community, she is lucky to be alive. Sepsis (septic shock / toxic shock) is an illness that damages the internal organs causing failures at alarming rates. And where we are today, with her mind in tact, spirits up, and family support where it stands, we can make it through a bump like this. There have been great strides made in prosthetics and rehabilitation. I am confident that Suzanne will pull through in this time of adversity to successfully regain her mobility.

My parents have reported in with your words of encouragement, prayers and generous gifts. I can't even begin to express my sincere appreciation for your support. I look forward to reporting in again soon with some good news. Our first priority at this time is to get Suzanne home with Gabrielle, where she will be able to recover quickly in an environment where she is comfortable and able to get back to being a mommy.

I know you have been reluctant to email us, as we've been overwhelmed dealing with the weeks news. But if you want to send a note to Suzanne I will print them out for her to see. And I'm sure she'd love to hear from you.

I hope all is well with you and yours.

Sincerely,

Patrick

Welcome to the Bionic Mom blog...

I would like to thank you for taking the time to have a look at this site. This is Patrick, Suzanne's husband. Here I will be periodically posting some updates about Suzanne's status and recovery. Many have asked me to start a blog to update everyone, rather than send occasional messages but, I have resisted on the basis of Suzanne’s privacy. However, I have decided that I will post some information so everyone is “in the loop.”

I have provided a picture of Suzanne taken this summer (at 7 months pregnant) where she looks radiant. The reason I chose Bionic Mom for the blog title and user name I think is obvious.

I will also include in the next few postings the earlier email messages I sent around. Following that, I will give today’s update. Please feel free to contact us at: Suzanne.and.Patrick@gmail.com if you would like send us a note privately. But feel free to post your comments in the blog if you’d like.

Thanks for browsing,

Patrick