Science
Disclaimer:
This post will be for those that are curious about the details and science behind Josie's surgery. If you have been a-okay with just knowing that Josie had surgery, that she is going to be smiling (literally) at the end of all of this, and that she is doing great in recovery then by all means, stop reading right here. I promise, no feelings hurt.
However, if details are sort of your thing or you're just amazed by modern medicine like I am, then I'll give you a couple of options to learn from....
Option 1...the Quick Overview
I found this 6 minute video at Johns Hopkins Medicine website. I think it's an excellent overview of Josie's surgery. It explains two options for facial reanimation, Josie underwent the second option that they discuss (the gracilis free flap procedure). If you'd like to skip ahead in the video to where they discuss her procedure, it starts at 2 min. 50 sec. I really love seeing these two ladies smile and seeing the difference that this procedure has made for them. It truly is life-changing. When I was watching this video last night, Josie heard the familiar term "facial reanimation" and immediately came over and watched intently. 💗
Option 2...Surgery in My Words
I have to admit that I have been sitting on the idea of writing this post for the past week. It's intimidating to me to write about something that feels so completely over my head, but ultimately this blog is proof of where we've been, the struggles we've had and it's important that we remember (no matter the quality of the story-telling). So, with that said, here is my best breakdown of her surgery (along with my random thoughts)...
Three Weeks Ago
Everything about this trip and surgery has been a little bit of chaos since we first received the call 3-weeks ago telling us that our surgery date needed to be changed. We literally only had time to panic, sit helpless for 6 days waiting for a new date, and then quickly regroup (leaving very little time to collect ourselves or to ask questions before we left for NY).
One Week Ago
We first met (and spoke with) Dr. Lerman last week, the day before surgery. He was the very important reason that our surgery date shifted. As you can imagine, we had a lot of questions that first meeting. Basic questions like... Who are you? and What is your role in our daughter's surgery? Traveling outside of the state for medical care creates a lot of issues and barriers (I cannot even begin to imagine the obstacles families face that have to travel internationally for care). This breakdown for us was a huge one and a lot of the changes that occurred happened so rapidly that we just had to 100% trust that our doctors had our backs and surf on our faith.
Surgery
It took us no time to learn why Dr. Lerman was so important to this surgery. He is a Plastic & Reconstructive Surgeon who specializes in "micro-surgery" or surgery under the microscope. His roles in Josie's surgery were to...
A. Tranfer a portion of her inner thigh muscle, the Gracillis, and take with it viable plumbing (1-vessel, 1-artery and as a bonus 1-nerve).
B. Give the transferred muscle a new job by dividing the muscle into two parts, forming a new partial orbicularis oris (the muscle around the mouth) and another running from her mouth to her cheekbone (the zygomaticus).
C. Find a blood source in her face to connect her new vessels to (for Josie this came from her temple and her lower jaw).
*There was some concern about finding vessels that would be long enough to reach the new muscle once in place. Because Josie's face is full of scar tissue and her vessels are not necessarily laid out the same as you or I, there was talk about having to graft vessels (from her ankle and/or deep into her neck). They actually called in a 3rd doctor who specializes in vessels for this part of her surgery and had us sign forms giving them permission to graft if necessary as well as give blood transfusions. I'm not doing a great job explaining this, but that was scary to me and it was a huge relief to us when they didn't have to do this.
D. Suture all the tiny vessels together, ensuring the transferred muscle had a new life source.
E. Shave down Josie's over-grown cheek bone.
After the surgery was complete Dr. Lerman explained that her newly connected vessels only required three days before they healed together. To monitor the blood flow during those three critical days, two tiny threads of wire were enveloped around the artery and vein. The wires lead out to two Doppler boxes that made sounds very similar to that of an ultrasound. These were checked hourly round the clock. The sound that you hear below is Josie's artery. The vessel sounds are much less pronounced and sound a lot like white noise (to me anyway). I would hold my breath every time they came to listen. If anything had gone wrong we would have heard silence. This thub, thub was music to our ears.
Dr. O's responsibility in this surgery was to map out Josie's facial nerves and to connect her newly zinging nerve to the transferred muscle. This sounds so simply put, but it literally takes her hours to map out and separate Josie's facial nerves before the actual connections are made. Especially when she has a face full of scar tissue and parts that are not necessarily where they are expected to be, "everybody's kitchen is different". Dr. O also plugged in the bonus nerve that came with Josie's new muscle, it is the hope that this will give her even more muscle control, sensation and facial expression.
What to Expect...
The muscle will take several months to begin working and six months to fully be cooperating. When we head home we will have a referral for one of the top facial occupational therapists in the country, luckily for us she's in the Midwest (Wisconsin). We've also been told that she will Skype therapy sessions (although I'm expecting we'll have to make the drive at least once).
We've been given the instruction that Josie cannot have any trauma to her left face for at least 3-months. This means no contact activities...wrestling with siblings, jumping on the trampoline, riding bikes are all out of the question for her. At this point I really do feel like I need to send her out into the world wrapped in bubble wrap, especially when she won't be in my care 24/7.
Her swelling continues to go down daily, her doctors have told us to expect to see big improvements in her swelling for the first six weeks. After that the progress will slow and her changes will be more subtle over the next 6-12 mos. Her new muscle will remain swollen for quite some time. She's very hopeful to "look normal" before she starts school.😉
Today
Josie tells me she has very little pain, and has said no to Tylenol and Motrin the past few days. She does tire fairly quickly and her leg stiffens after she sits and tries to get back up to walk. Walking an incline or decline is hard for her (the decline is the hardest).
She had her doppler wires removed today by Dr. Lerman. Josie told me afterwards that she was glad she didn't know what to expect because it "really hurt". I noticed her toes curl a couple of times as he pulled the wires out, but other than that I would have never known she was in pain. This year has been such a different experience coming with 10-year old Josie. She's growing up.
One last thing before I sign off...I have to give a huge shout out to my sister, Holly. A lot of you probably know that her husband has been gone since June. She has been a rockstar this summer; managing a farm, livestock, being mom, and growing her own business (and that's barely the tip of the iceberg). She did it all and made it look easy. Love you Sister!
This post will be for those that are curious about the details and science behind Josie's surgery. If you have been a-okay with just knowing that Josie had surgery, that she is going to be smiling (literally) at the end of all of this, and that she is doing great in recovery then by all means, stop reading right here. I promise, no feelings hurt.
 |
| Josie reading while I type |
Option 1...the Quick Overview
I found this 6 minute video at Johns Hopkins Medicine website. I think it's an excellent overview of Josie's surgery. It explains two options for facial reanimation, Josie underwent the second option that they discuss (the gracilis free flap procedure). If you'd like to skip ahead in the video to where they discuss her procedure, it starts at 2 min. 50 sec. I really love seeing these two ladies smile and seeing the difference that this procedure has made for them. It truly is life-changing. When I was watching this video last night, Josie heard the familiar term "facial reanimation" and immediately came over and watched intently. 💗
Option 2...Surgery in My Words
I have to admit that I have been sitting on the idea of writing this post for the past week. It's intimidating to me to write about something that feels so completely over my head, but ultimately this blog is proof of where we've been, the struggles we've had and it's important that we remember (no matter the quality of the story-telling). So, with that said, here is my best breakdown of her surgery (along with my random thoughts)...
Three Weeks Ago
Everything about this trip and surgery has been a little bit of chaos since we first received the call 3-weeks ago telling us that our surgery date needed to be changed. We literally only had time to panic, sit helpless for 6 days waiting for a new date, and then quickly regroup (leaving very little time to collect ourselves or to ask questions before we left for NY).
One Week Ago
We first met (and spoke with) Dr. Lerman last week, the day before surgery. He was the very important reason that our surgery date shifted. As you can imagine, we had a lot of questions that first meeting. Basic questions like... Who are you? and What is your role in our daughter's surgery? Traveling outside of the state for medical care creates a lot of issues and barriers (I cannot even begin to imagine the obstacles families face that have to travel internationally for care). This breakdown for us was a huge one and a lot of the changes that occurred happened so rapidly that we just had to 100% trust that our doctors had our backs and surf on our faith.
Surgery
It took us no time to learn why Dr. Lerman was so important to this surgery. He is a Plastic & Reconstructive Surgeon who specializes in "micro-surgery" or surgery under the microscope. His roles in Josie's surgery were to...
A. Tranfer a portion of her inner thigh muscle, the Gracillis, and take with it viable plumbing (1-vessel, 1-artery and as a bonus 1-nerve).
B. Give the transferred muscle a new job by dividing the muscle into two parts, forming a new partial orbicularis oris (the muscle around the mouth) and another running from her mouth to her cheekbone (the zygomaticus).
C. Find a blood source in her face to connect her new vessels to (for Josie this came from her temple and her lower jaw).
*There was some concern about finding vessels that would be long enough to reach the new muscle once in place. Because Josie's face is full of scar tissue and her vessels are not necessarily laid out the same as you or I, there was talk about having to graft vessels (from her ankle and/or deep into her neck). They actually called in a 3rd doctor who specializes in vessels for this part of her surgery and had us sign forms giving them permission to graft if necessary as well as give blood transfusions. I'm not doing a great job explaining this, but that was scary to me and it was a huge relief to us when they didn't have to do this.
D. Suture all the tiny vessels together, ensuring the transferred muscle had a new life source.
E. Shave down Josie's over-grown cheek bone.
After the surgery was complete Dr. Lerman explained that her newly connected vessels only required three days before they healed together. To monitor the blood flow during those three critical days, two tiny threads of wire were enveloped around the artery and vein. The wires lead out to two Doppler boxes that made sounds very similar to that of an ultrasound. These were checked hourly round the clock. The sound that you hear below is Josie's artery. The vessel sounds are much less pronounced and sound a lot like white noise (to me anyway). I would hold my breath every time they came to listen. If anything had gone wrong we would have heard silence. This thub, thub was music to our ears.
Dr. O's responsibility in this surgery was to map out Josie's facial nerves and to connect her newly zinging nerve to the transferred muscle. This sounds so simply put, but it literally takes her hours to map out and separate Josie's facial nerves before the actual connections are made. Especially when she has a face full of scar tissue and parts that are not necessarily where they are expected to be, "everybody's kitchen is different". Dr. O also plugged in the bonus nerve that came with Josie's new muscle, it is the hope that this will give her even more muscle control, sensation and facial expression.
 |
| Diagram of the Facial Nerve |
What to Expect...
The muscle will take several months to begin working and six months to fully be cooperating. When we head home we will have a referral for one of the top facial occupational therapists in the country, luckily for us she's in the Midwest (Wisconsin). We've also been told that she will Skype therapy sessions (although I'm expecting we'll have to make the drive at least once).
We've been given the instruction that Josie cannot have any trauma to her left face for at least 3-months. This means no contact activities...wrestling with siblings, jumping on the trampoline, riding bikes are all out of the question for her. At this point I really do feel like I need to send her out into the world wrapped in bubble wrap, especially when she won't be in my care 24/7.
Her swelling continues to go down daily, her doctors have told us to expect to see big improvements in her swelling for the first six weeks. After that the progress will slow and her changes will be more subtle over the next 6-12 mos. Her new muscle will remain swollen for quite some time. She's very hopeful to "look normal" before she starts school.😉
Today
Josie tells me she has very little pain, and has said no to Tylenol and Motrin the past few days. She does tire fairly quickly and her leg stiffens after she sits and tries to get back up to walk. Walking an incline or decline is hard for her (the decline is the hardest).
She had her doppler wires removed today by Dr. Lerman. Josie told me afterwards that she was glad she didn't know what to expect because it "really hurt". I noticed her toes curl a couple of times as he pulled the wires out, but other than that I would have never known she was in pain. This year has been such a different experience coming with 10-year old Josie. She's growing up.
One last thing before I sign off...I have to give a huge shout out to my sister, Holly. A lot of you probably know that her husband has been gone since June. She has been a rockstar this summer; managing a farm, livestock, being mom, and growing her own business (and that's barely the tip of the iceberg). She did it all and made it look easy. Love you Sister!
 |
| Our view for the past 13 days |
Comments
Post a Comment