Okay, I'm sure everyone is in bed, but thought I would give another update. We've now gone into overtime. We've now surpassed the 14 hour mark. I really hope that the surgeon's don't charge time and a half. It's now 11:15PM and they are still going.
Last call from surgery was a little before 10PM and all was still going well. I'm sitting here thinking of how incredibly strong Sue is and how proud I am of her with all that she has been through. She is incredible!
I will catch up with everyone in the AM. Good night.
Jason
Tuesday, March 27, 2012
Still Waiting
Good evening everyone. It is nearly 8PM and they are still at work in the OR. Sue's Dad, sister, and I were having dinner at about 6:30PM when I got the last call. All is going well and they had just started with the microvascular surgery, or reconnecting the harvested veins and starting blood flow. This is a tedious portion of the surgery, as you may probably imagine. This is all so amazing to me.
The report from the suite, at that time, was that they still had a good chunk of time to go. I believe that anything before 10PM would be a great surprise for the team. I can only imagine how long a day it has been for them. I'm pretty much wiped out from sitting in the lounge.
I'll try and update again later tonight when everything is done and we've had a chance to sit down and talk with the surgeons. I appreciate everyone's prayers and thoughts for Sue today. We are truly blessed to have such a wonderful support system...family, friends, co-workers. You are all awesome!
Jason
The report from the suite, at that time, was that they still had a good chunk of time to go. I believe that anything before 10PM would be a great surprise for the team. I can only imagine how long a day it has been for them. I'm pretty much wiped out from sitting in the lounge.
I'll try and update again later tonight when everything is done and we've had a chance to sit down and talk with the surgeons. I appreciate everyone's prayers and thoughts for Sue today. We are truly blessed to have such a wonderful support system...family, friends, co-workers. You are all awesome!
Jason
Update #1
Hi all,
Here is the first update from "The U". I have been lucky enough to have Dick and Marie keeping me company today. They got the girls off to school and came down.
I have spoken with the OR a couple of times so far and things are progressing slowly, but things are going "swimmingly" so far. The latest update had all 4 of the surgeons working on Sue. They are currently working on her dental implants and just started harvesting what they need from her scapula to start the rebuild.
I would expect to hear more about their progress around 3PM. I'll post again a little later.
Jason
Here is the first update from "The U". I have been lucky enough to have Dick and Marie keeping me company today. They got the girls off to school and came down.
I have spoken with the OR a couple of times so far and things are progressing slowly, but things are going "swimmingly" so far. The latest update had all 4 of the surgeons working on Sue. They are currently working on her dental implants and just started harvesting what they need from her scapula to start the rebuild.
I would expect to hear more about their progress around 3PM. I'll post again a little later.
Jason
Off and Running
Good morning everyone. Sue asked me to handle her blog through surgery today, as well as for the next couple of days before she wakes up. I will do my best, but know that I am not nearly the writer that she is.
We arrived at "the U" at 6AM this AM. After getting Sue checked in, we were grateful for a visit from Pastor Trautmann. He has been extremely supportive for our entire family through Sue's journey. His words and prayer for Sue this morning were comforting for us both.
Sue was feeling quite anxious last night and this morning, but was being incredibly strong as she mentally prepared for today. In true form, she was worried more about the kids and me vs. the 10-13 hour surgery that she was about to subject herself to. Sue was comforted after seeing a few of the surgeons that would be working on her today. They reinforced that she needed this to be done to protect her eye and for her general well-being. We are both very comfortable with the group that will be working on her today.
I always dread the walk from the pre-op room to the hallway, and having to say good-bye to her. It's one of those hard moments in life. She was wheeled back to her OR suite at about 8:15AM. I just spoke to the circulating nurse and they actually started surgery at about 9:20AM. It took them quite awhile to prep and position her. I will hopefully be able to update again in the early afternoon.
Please keep Sue and her surgical team in your prayers today.
Jason
We arrived at "the U" at 6AM this AM. After getting Sue checked in, we were grateful for a visit from Pastor Trautmann. He has been extremely supportive for our entire family through Sue's journey. His words and prayer for Sue this morning were comforting for us both.
Sue was feeling quite anxious last night and this morning, but was being incredibly strong as she mentally prepared for today. In true form, she was worried more about the kids and me vs. the 10-13 hour surgery that she was about to subject herself to. Sue was comforted after seeing a few of the surgeons that would be working on her today. They reinforced that she needed this to be done to protect her eye and for her general well-being. We are both very comfortable with the group that will be working on her today.
I always dread the walk from the pre-op room to the hallway, and having to say good-bye to her. It's one of those hard moments in life. She was wheeled back to her OR suite at about 8:15AM. I just spoke to the circulating nurse and they actually started surgery at about 9:20AM. It took them quite awhile to prep and position her. I will hopefully be able to update again in the early afternoon.
Please keep Sue and her surgical team in your prayers today.
Jason
Friday, March 16, 2012
The Countdown Is On
The countdown is on….64 hours until my surgery. I have accomplished everything on my to-do list with things that will help to keep my family organized while I am in the hospital and recovering at home. This included creating for my parents a "Surgery Survival Guide: Everything You Need To Know About Taking Care of Mackenzie and Kendall." This week was filled with appointments with each of the surgeons that are on my surgical team. My brain is completely fried after listening to each of them give their point of view of what will be taking place to fix my face. On several occasions I felt compelled to plug my ears with my fingers and sing la, la, la, la. Yet, I made it through each and every appointment....up until the last one scheduled on Friday with the Maxillofacial surgeon. By Thursday afternoon, I was done - there was nothing this surgeon was going to tell me that I hadn't already heard from the other surgeons. And I just needed a break. The appointment was cancelled.
Keeping busy was good for my sanity. If it were not for the long to-do list, I would have spent too much time thinking about what is to come and freaking out about it. I did have a little melt down after my appointment with the Plastic Surgeon, but overall I have been doing pretty well. Despite my busyness this past week I did manage to squeeze in some one on one time with Mackenzie, Kendall and Jason…but the highlight was going to see The Hunger Games. You could say it was my "last dying wish" before our lives are turned upside down.
During the down times, I spend a lot of time talking to God and asking Him for his goodness and mercy during and after the surgery. I don't know what is worse, no knowledge or too much knowledge going into a surgery. Last year, I had was afraid of the unknown. This time I am afraid because I know what is to come. Jason and my parents will be camping out at the hospital once again as the surgery will most likely take 12-13 hours. I will be in intensive care following the surgery for two days. They will be keeping me heavily sedated with a breathing tube....I put my foot down and instructed the surgeons that there was no possible way I would allow a trache to be inserted into my throat again.
Without going into to much detail, this surgery will be complicated and not without risk..especially since the skin and tissue in my face has been damaged due to radiation. It will take several months, possibly longer, for my face to heal. And then it will be back to surgery for further revision and skin grafting. The surgeons say it will be a take up to a year for everything to be completed.
In the midst of trying to keep it together, I have to consciously decide to not go down the road of blame and anger. I often wonder why it is that after four years of dealing with cancer and its aftermath, that I am still facing more pain and recovery. I envy the cancer patients who go through treatment, are healed and then are able to move on with life. I on the other hand feel stuck.
Yet once again, I am so blessed by the many friends and family offering words of encouragement and support. God is using them more than they know to minister to me especially at the times I need it the most. I have learned that this is the way God speaks to me…through others in my life. I am so thankful for my neighborhood friends that have signed up to bring meals for the next couple of weeks or have offered have the girls over during Spring Break. It helps me to feel at ease to know that my family will be taken care of. God has blessed me with wonderful parents and in-laws willing to interrupt their own lives to come and care for my girls while I am in the hospital and recovering also allowing Jason to attempt to maintain a normal schedule at work.
Jason will be updating my blog/Facebook page during surgery to let you all know how things are progressing. A special thanks to those of you that will be keeping me in your prayers. I am thankful for all of my friends and family that are willing to go on this next journey with me.
With Love,
Sue
Keeping busy was good for my sanity. If it were not for the long to-do list, I would have spent too much time thinking about what is to come and freaking out about it. I did have a little melt down after my appointment with the Plastic Surgeon, but overall I have been doing pretty well. Despite my busyness this past week I did manage to squeeze in some one on one time with Mackenzie, Kendall and Jason…but the highlight was going to see The Hunger Games. You could say it was my "last dying wish" before our lives are turned upside down.
During the down times, I spend a lot of time talking to God and asking Him for his goodness and mercy during and after the surgery. I don't know what is worse, no knowledge or too much knowledge going into a surgery. Last year, I had was afraid of the unknown. This time I am afraid because I know what is to come. Jason and my parents will be camping out at the hospital once again as the surgery will most likely take 12-13 hours. I will be in intensive care following the surgery for two days. They will be keeping me heavily sedated with a breathing tube....I put my foot down and instructed the surgeons that there was no possible way I would allow a trache to be inserted into my throat again.
Without going into to much detail, this surgery will be complicated and not without risk..especially since the skin and tissue in my face has been damaged due to radiation. It will take several months, possibly longer, for my face to heal. And then it will be back to surgery for further revision and skin grafting. The surgeons say it will be a take up to a year for everything to be completed.
In the midst of trying to keep it together, I have to consciously decide to not go down the road of blame and anger. I often wonder why it is that after four years of dealing with cancer and its aftermath, that I am still facing more pain and recovery. I envy the cancer patients who go through treatment, are healed and then are able to move on with life. I on the other hand feel stuck.
Yet once again, I am so blessed by the many friends and family offering words of encouragement and support. God is using them more than they know to minister to me especially at the times I need it the most. I have learned that this is the way God speaks to me…through others in my life. I am so thankful for my neighborhood friends that have signed up to bring meals for the next couple of weeks or have offered have the girls over during Spring Break. It helps me to feel at ease to know that my family will be taken care of. God has blessed me with wonderful parents and in-laws willing to interrupt their own lives to come and care for my girls while I am in the hospital and recovering also allowing Jason to attempt to maintain a normal schedule at work.
Jason will be updating my blog/Facebook page during surgery to let you all know how things are progressing. A special thanks to those of you that will be keeping me in your prayers. I am thankful for all of my friends and family that are willing to go on this next journey with me.
With Love,
Sue
Thursday, March 8, 2012
Surgery has been scheduled
It was a Saturday morning in December. I had just finished doing what I do best on Saturday mornings...sleeping in. I came down the stairs, still attempting to wake up, and as soon as I reached the bottom step a little hand with a piece of paper was waving in front of my face. It was a Christmas card Kendall had been working on all morning while I was milking every possible minute I could to stay in bed. Kendall had a very strong determination to show me what she had done and to give me specific instructions on what to do with it. It was a Christmas card she made, clearly on the computer paper I have told her endless times that was not to be used for coloring. Yet, I did not have it in me to remind her that computer paper was too expensive to use for drawing as I soon read the front of the card. It said "Gloria", the theme of the Christmas concert we had attended at church the night before. Underneath it was a carefully drawn star. Inside the card included a Bible verse that Kendall received in Sunday School. It was one of the first Bible verses she had ever memorized and coincidentally it was a verse that was near and dear to my heart throughout my battle with cancer. The card read....
"Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls." Matthew 11:29
After reading the card and basking in the moment that my daughter had memorized a verse that I cherished, Kendall said the card was created specially for our Pastor and insisted that I send the card to him immediately. He has become near and dear to our family as he has supported us over the past couple of years. I set the card on the counter, and walked away not realizing the importance of the card. Kendall once again insisted that I mail the card to our Pastor. My strong willed daughter was not going to give up, so I got out an envelope, addressed it, and put the envelope in the mail on the following Monday. Little did I know what God was doing in the heart of my little girl and about to do for the person on the receiving end of the card.
Within a few days, I got a call from our Pastor. He was so touched by the card. He wanted Kendall to know that not only was it his favorite Christmas card he had received, but it meant more to him that she would ever know. For it could not have been better timing for him to receive the message of hope that the card and the Bible verse in it gave to him. I could tell it in his voice and in my heart that it was something he needed to hear. God had clearly used my little girl to show encouragement to someone that needed it at that time.
I have the card with the Bible verse Kendall received in Sunday School taped to our refrigerator. It is next to our family calendar that helps to keep our family somewhat organized. Since I look at this calendar at least 2-3 times a day to make sure I get everyone where they need to be, including myself, I read the verse every day.
This verse will once again be giving me much needed hope and peace in the upcoming weeks. The long awaited, much planned, and much anticipated surgery to fix my face has finally been scheduled. After waiting almost one year and spending countless hours meeting with surgeons reviewing the risks, potential complications and plan of action to fix my face, the surgery has been scheduled for March 27. It is going to be a difficult surgery that will involve three different surgeons. It will most likely be as involved and as intense as my maxillectomy requiring bone, skin and tissue to be transplanted from my shoulder. Should everything go as planned, the surgery will fix the contour of my face, the droop of my eye lid, provide better support for my eye, and replace missing bone and teeth.
On Monday, we got back from our annual trip to Florida. We sailed away on another Disney cruise and spent some time in the Disney area. It was a wonderful time spent with Jason and the girls as well as Jason's parents. It was much needed time to spend together before we embark on this next journey. I am anticipating this year to be another long year filled with surgeries and recovery. For it may take several surgeries to get the end result that my surgeons and I are looking for.
Surprisingly, I have felt very at peace about the surgery. It may be because I am still feeling the high of the happiest place on earth that Disney gives. But knowing myself all to well, I am sure my anxiety level will increase as the date approaches. Memories of the pain and discomfort I felt after my last surgery are starting to loom in the back of my mind. I am beginning to prepare the girls for what is to come as well as map out how to make everyone's life easier while I am in the hospital and recovering. Despite the risks, I am so excited to have a new face....to hold my head up high again...to be comfortable in my own skin again.
I am thankful for the help that many of you have already offered and for the assistance that our parents will be giving. Please keep me and my family in your prayers over the next few weeks. I will continue to keep you updated through this blog.
Love,
Sue
"Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls." Matthew 11:29
After reading the card and basking in the moment that my daughter had memorized a verse that I cherished, Kendall said the card was created specially for our Pastor and insisted that I send the card to him immediately. He has become near and dear to our family as he has supported us over the past couple of years. I set the card on the counter, and walked away not realizing the importance of the card. Kendall once again insisted that I mail the card to our Pastor. My strong willed daughter was not going to give up, so I got out an envelope, addressed it, and put the envelope in the mail on the following Monday. Little did I know what God was doing in the heart of my little girl and about to do for the person on the receiving end of the card.
Within a few days, I got a call from our Pastor. He was so touched by the card. He wanted Kendall to know that not only was it his favorite Christmas card he had received, but it meant more to him that she would ever know. For it could not have been better timing for him to receive the message of hope that the card and the Bible verse in it gave to him. I could tell it in his voice and in my heart that it was something he needed to hear. God had clearly used my little girl to show encouragement to someone that needed it at that time.
I have the card with the Bible verse Kendall received in Sunday School taped to our refrigerator. It is next to our family calendar that helps to keep our family somewhat organized. Since I look at this calendar at least 2-3 times a day to make sure I get everyone where they need to be, including myself, I read the verse every day.
This verse will once again be giving me much needed hope and peace in the upcoming weeks. The long awaited, much planned, and much anticipated surgery to fix my face has finally been scheduled. After waiting almost one year and spending countless hours meeting with surgeons reviewing the risks, potential complications and plan of action to fix my face, the surgery has been scheduled for March 27. It is going to be a difficult surgery that will involve three different surgeons. It will most likely be as involved and as intense as my maxillectomy requiring bone, skin and tissue to be transplanted from my shoulder. Should everything go as planned, the surgery will fix the contour of my face, the droop of my eye lid, provide better support for my eye, and replace missing bone and teeth.
On Monday, we got back from our annual trip to Florida. We sailed away on another Disney cruise and spent some time in the Disney area. It was a wonderful time spent with Jason and the girls as well as Jason's parents. It was much needed time to spend together before we embark on this next journey. I am anticipating this year to be another long year filled with surgeries and recovery. For it may take several surgeries to get the end result that my surgeons and I are looking for.
Surprisingly, I have felt very at peace about the surgery. It may be because I am still feeling the high of the happiest place on earth that Disney gives. But knowing myself all to well, I am sure my anxiety level will increase as the date approaches. Memories of the pain and discomfort I felt after my last surgery are starting to loom in the back of my mind. I am beginning to prepare the girls for what is to come as well as map out how to make everyone's life easier while I am in the hospital and recovering. Despite the risks, I am so excited to have a new face....to hold my head up high again...to be comfortable in my own skin again.
I am thankful for the help that many of you have already offered and for the assistance that our parents will be giving. Please keep me and my family in your prayers over the next few weeks. I will continue to keep you updated through this blog.
Love,
Sue
Wednesday, January 11, 2012
Mackenzie's Gall Stone
It started a couple of nights ago...Mackenzie was experiencing severe abdominal pain and nausea. She was in so much pain she was doubled over, vomiting and screaming in bed....unable to sleep. I spent the majority of the night in bed with her trying to keep her calm. Due to complications of being born at 23 weeks, Mackenzie has lost half of her intestines and colon. Stomach issues are not abnormal for her. But this time was different. This pain and discomfort started to happen at the beginning of the school year and has kept her from going to school on several occasions. Her last attack was a couple of weeks ago and this time it was worse. I asked Mackenzie where the pain was and she pointed to the area of her abdomen where her gall bladder is located. My instincts started telling me she had a gall stone.
The next day I called her Gastroenterologist and he scheduled an ultra sound and x-rays of her abdomen. While Mackenzie was laying on the hospital bed watching TV, I was closely watching the ultra sound screen. As the tech started looking at her gall bladder, I quickly noticed a round object, a rather round large object. It quickly confirmed my instincts...Mackenzie had a gall stone.
After speaking with her doctor this morning, it is clear that Mackenzie will need to have the stone removed. Typically this procedure is simple, however in cases like Mackenzie, it is complicated. Due to the many surgeries (we have counted over 20 surgeries in her lifetime) on Mackenzie's intestines, she has a lot of adhesions. Her intestines are fragile and have a tendency to perforate any time she has a surgery.
We will be meeting with her surgeon on Friday to discuss the options. It will be the surgeon that operated on Mackenzie many times when she was a little itty bitty baby. It will be fun to see him again and I know he will enjoy seeing Mackenzie and the progress she has made over the years. But at the same time, I know he will be sad to see her back in his office and operating room again.
After spending a few days with Mackenzie at home while she was sick, our refrigerator and pantry became bare. I was unable to do any grocery shopping forcing us to be creative with coming up with an option for dinner. Today, Mackenzie felt good enough to go back to school allowing me to finally make a trip to Target to buy much needed food for my family. Grocery shopping is one of my least favorite things to do. My goal is to get through Target quickly as I cross off the items on my list. Yet to no avail, I always bump into a friend or neighbor and find myself visiting with them. Before I know it I am leaving Target after being there over an hour due to these frequent encounters. Today, I bumped into an old friend and we spoke quite sometime catching up with one another and filling her in on how I was doing. Soon my friend began telling me how I should publish a book utilizing the posts from my blog during my battle with cancer. I have been encouraged by many others to send my blog entries to a publisher.
This afternoon I decided to read through my blog entries beginning with day one...my diagnosis. I wanted to see if they truly were worthy of being published. As I was reading each blog I was listening to my cancer playlist in iTunes...all of the songs of hope I included on my blog. Tears streamed down my face as I was reading through each blog and each of the posts by friends and family. My mind was flooded with memories of the pain and suffering I experienced. It was difficult to read. But at the same time it reminded me of the TREMENDOUS love I felt throughout my battle. But more importantly it reminded me of the lessons I learned about trusting in God and leaning on him in difficult circumstances. Something I needed to be reminded of as I began to worry about Mackenzie and her gall stone.
Amazingly, I have been pretty calm. Well, not completely calm, but calmer that I would have been three years ago. Reading the blogs today also helped me to become aware of how much I have grown and how much more I trust God with difficult situations. Three years ago I would have allowed myself to be overwhelmed with fear as I think back to what Mackenzie experienced 10 years ago. Something I would not not want or nor want Mackenzie to relive. Today, I am entrusting Mackenzie to God and giving full control over this situation to Him. As always, she is so strong and such a trooper. Every day she amazes me with her positive attitude and fearless nature with all of that she struggles with in her life - more than any child should ever have to face in life.
As for my surgery, the plan remains the same...to have it done in March. A lot of planning is going on right now and I am frequently visiting with the surgeons that will be involved in the surgery. A plan has been set with utilizing bone and tissue from my shoulder to reconstruct the orbit underneath my eye. The grafted bone from my leg in my face will be taken apart and repositioned. Should my skin not stay intact, skin from my shoulder will also be transplanted. It will be complicated surgery, but as the days go I am becoming more and more ready for it to happen.
Please keep Mackenzie in your prayers over the next week. Pray the stone will not move into her intestines and that the surgeon will be able to remove it without any complications.
With love,
Sue
The next day I called her Gastroenterologist and he scheduled an ultra sound and x-rays of her abdomen. While Mackenzie was laying on the hospital bed watching TV, I was closely watching the ultra sound screen. As the tech started looking at her gall bladder, I quickly noticed a round object, a rather round large object. It quickly confirmed my instincts...Mackenzie had a gall stone.
After speaking with her doctor this morning, it is clear that Mackenzie will need to have the stone removed. Typically this procedure is simple, however in cases like Mackenzie, it is complicated. Due to the many surgeries (we have counted over 20 surgeries in her lifetime) on Mackenzie's intestines, she has a lot of adhesions. Her intestines are fragile and have a tendency to perforate any time she has a surgery.
We will be meeting with her surgeon on Friday to discuss the options. It will be the surgeon that operated on Mackenzie many times when she was a little itty bitty baby. It will be fun to see him again and I know he will enjoy seeing Mackenzie and the progress she has made over the years. But at the same time, I know he will be sad to see her back in his office and operating room again.
After spending a few days with Mackenzie at home while she was sick, our refrigerator and pantry became bare. I was unable to do any grocery shopping forcing us to be creative with coming up with an option for dinner. Today, Mackenzie felt good enough to go back to school allowing me to finally make a trip to Target to buy much needed food for my family. Grocery shopping is one of my least favorite things to do. My goal is to get through Target quickly as I cross off the items on my list. Yet to no avail, I always bump into a friend or neighbor and find myself visiting with them. Before I know it I am leaving Target after being there over an hour due to these frequent encounters. Today, I bumped into an old friend and we spoke quite sometime catching up with one another and filling her in on how I was doing. Soon my friend began telling me how I should publish a book utilizing the posts from my blog during my battle with cancer. I have been encouraged by many others to send my blog entries to a publisher.
This afternoon I decided to read through my blog entries beginning with day one...my diagnosis. I wanted to see if they truly were worthy of being published. As I was reading each blog I was listening to my cancer playlist in iTunes...all of the songs of hope I included on my blog. Tears streamed down my face as I was reading through each blog and each of the posts by friends and family. My mind was flooded with memories of the pain and suffering I experienced. It was difficult to read. But at the same time it reminded me of the TREMENDOUS love I felt throughout my battle. But more importantly it reminded me of the lessons I learned about trusting in God and leaning on him in difficult circumstances. Something I needed to be reminded of as I began to worry about Mackenzie and her gall stone.
Amazingly, I have been pretty calm. Well, not completely calm, but calmer that I would have been three years ago. Reading the blogs today also helped me to become aware of how much I have grown and how much more I trust God with difficult situations. Three years ago I would have allowed myself to be overwhelmed with fear as I think back to what Mackenzie experienced 10 years ago. Something I would not not want or nor want Mackenzie to relive. Today, I am entrusting Mackenzie to God and giving full control over this situation to Him. As always, she is so strong and such a trooper. Every day she amazes me with her positive attitude and fearless nature with all of that she struggles with in her life - more than any child should ever have to face in life.
As for my surgery, the plan remains the same...to have it done in March. A lot of planning is going on right now and I am frequently visiting with the surgeons that will be involved in the surgery. A plan has been set with utilizing bone and tissue from my shoulder to reconstruct the orbit underneath my eye. The grafted bone from my leg in my face will be taken apart and repositioned. Should my skin not stay intact, skin from my shoulder will also be transplanted. It will be complicated surgery, but as the days go I am becoming more and more ready for it to happen.
Please keep Mackenzie in your prayers over the next week. Pray the stone will not move into her intestines and that the surgeon will be able to remove it without any complications.
With love,
Sue
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