Blessed Be Your Name

I am finally able to post again. Although my sweet, wonderful, amazing husband has done a great job! I am so thankful he posted things for me so I will be able to look back and remember. This will probably be a small update. I wanted to spend the end of this blog in praise and prayer. I am doing better daily. I do not have the endurance that I feel I should so that has been pretty frustrating at times. There is a loop around the nurses station and back to my room. They encourage us resection gals to walk as much as possible. It is hard. Jason said I get extra points for the added degree of difficulty of crutches. With my chin stitched down I can hardly see where I am going and balance is really off. More than that though, it is very tiresome, heavy and causes lots of tension in the back of your neck to have your head down like that. I didn't realize until Jason told me that the other resection patients are able to use their hand as they walk to support their forehead (or the front of their head). Since I am on crutches, all the weight is on my neck and there is nothing I can do to take that strain off. I do have to say I was proud to make 3 laps today and was able to sit in the Solarium for about 30 minutes. I will take it!
I am still fighting this stinkin' fever. They started Vancomyocin, a very strong antibiotic IV today. It is very acidic on the veins so I hope they hold up for me. The cultured everything last night and everything that is back looks good. We are still waiting on blood cultures. My WBC (infection count) is normal but my incision is more "swollen and red" then what they normally are at this point. I will have 4 more days of treatment. I am hopeful that this won't slow me down on getting out of here.

As of right now I have a bronch scheduled for Thursday in the OR. If everything looks good at that time they will cut my chin stitches and I can probably discharge to the hotel on Friday. I really look forward to eating again!!!! Tomorrow will make 6 days without food. I am so hungry...especially when my roommate gets to eat :( They won't allow me to eat till after the bronch.

The next few days will be trying to get rid of this fever, building endurance, and continuing to heal. I do want to add to Jason's talking about the sweet new friend that I was able to meet. We met on the facebook but meeting her in person was so special to me. We have been able to "visit" each day for a bit. We sit and write notes on our white board and notepad. Please add her to you prayers. I am so glad God placed us here at the same time. It has been a great encouragement.

We have been so overwhelmed with the love we have been shown and the people God has placed in our lives. The next little part is a song, a verse (I have so many but will just post one for tonight) and a prayer~ we never want to take for granted or forget what has been done for us.

 

 

Blessed Be Your Name

In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name
Blessed Be Your name

When I'm found in the desert place
Though I walk through the wilderness
Blessed Be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
Blessed be Your name

When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name
Blessed be Your name

On the road marked with suffering
Though there's pain in the offering
Blessed be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name

Proverbs 3:3

"Let love and faithfulness never leave you; bind them around your neck,

write them on the tablet of your heart"

Father,
Thank you for pouring out your love upon my family and myself. For surrounding us with people of faith and love. I thank you for the way you have put us on the hearts of those who don't even know us and for how you have used those we do know. For all the prayers, texts, emails, cards, scripture, food, flowers, bears, help with our kids, money, people coming to Boston to be with us...and on and on. Lord, you know all that has been done for us. You put it all into action. I am overwhelmed with it all and so undeserving, Thank you for family, whether is be church, friends, or blood relatives. Thank you for my precious husband. You gave me more in him then I could have ever dreamed for myself. Thank you for placing us with the an amazing medical team of doctors, nurses, physical therapist and all the others along our path. Lord, please help me to always remember what you have done for us. What I have learned. Thank you for using this time to show me how my faith is suppose to be. Thank you for deepening my relationship with you. Help me to be wise and to share with others what you have done for me. Lord, let me speak clearly and confidently when I tell of all you've done. I pray for strength in the days to come. Thank you for giving us more then we ever deserve. In Jesus name. Amen.

Post-op days 2 and 3

Saturday
I missed most of Sarah's first day as I slept while her mom sat with her. When I saw her Friday afternoon she looked really great. Saturday, day 2 post op, she was still in a lot of pain. Most of the pain is a headache and a great deal of neck pain.

Her chin is stitched to her chest to keep her neck flexed. The stitch length is about 3". It is one thread that runs through her chin and around through the skin on her chest. It's purpose to let her know when she is trying to move her head too much. The Dr will remove the chin stitch when she is discharged.

Sarah's chin stitch

Saturday morning started off difficult. The nurse suggested that Sarah should try to get up and walk (crutch) a bit. She made her first attempt at 10:00 am Saturday morning. It was very difficult for her to get up because her neck and head were hurting so badly. She made it up to the side of the bed but was too dizzy to go any farther. She laid back down in bed, very frustrated and upset with herself. I tried to reassure her that it was ok and that she just needed a little more time to recover.

God's timing is always perfect. Just a few minutes after she laid down, both of our phones started chiming with text message alerts. Not just a few alerts. It kept going. And going. For nearly 5 solid minutes. Our Park Plaza church family was at a marriage retreat and they were flooding us with text messages containing prayers and words of encouragement! We received over eighty messages in just a few minutes. Nothing I said to her could have made the impact on her attitude that those messages did! She was able to get up and make it to the restroom just an hour after we received the messages. Later, she was able to make it down the hall and sit in the solarium for half an hour. I know many of those that sent messages will never read this, but those that do, please know that you were God's instrument of encouragement. Thank you!

Sarah reading the texts.

Up and walking! Kinda! :)

Relaxing in the solarium.

Sarah was worn out after the trip to the solarium and back. She laid down and took a short nap, which was good to see her comfortable enough to do so. Later that afternoon, we recieved eighty more text messages from our Park family. We are so blessed to be a part of such a great church and have such fantastic friends who have gone out of their way to let us know we are being prayed for.

Sarah had the opportunity to meet Teresa, a woman with whom she is Facebook friends. Teresa had her resection on Wednesday, the day before Sarah. She is doing really well. Teresa has been dealing with her stenosis for eight years. She has had a much tougher road than Sarah. It was good for them to talk and encourage each other. I left Sarah at 7:00 pm that night and went with Victor to try and find a few groceries and a dry erase board.

Sunday
Today, Sunday has been a good day. A nurse practitioner removed her JP Drain and the dressing around the incision site. This was a big relief as the tape and gauze was becoming itchy and was pulling on her skin when she moved. She was able to get up and make it to the solarium again today. Teresa came by and talked with her again. She was also able to meet another woman here this week whose resection was on Tuesday. Dr. Mathisen is a very busy guy!

She is running a bit of a fever tonight. The doctor on the floor wanted to be safe so he ordered blood, urine and sputum cultures as well as a chest x-ray. He listened to her lungs and said they sounded clear. We are hoping everything comes back negative and the fever subsides soon. Tonight will be her first night without one of us staying with her. I am nervous but her nurses have been really great and they are much better at caring for her than I am!

We have still been receiving texts from friends throughout the day. I cannot imagine going through this without all the support we have had from friends and family. Thank you again.

-Jason

Post op

I am ghost writing this one for Sarah. I've never enjoyed nor been very good a writing so just slog your way through this one.

- Jason


We checked in Thursday morning at 07:30. Sarah was taken back to the pre-op area to be readied for surgery. Her nurse had worked with the doctor who was about to do her surgery for 28 years. She said he is the absolute best in the world. That gave us a huge comfort coming from a nurse who, if she felt differently, would have not said anything at all. :) After about 30 minutes of prep work, we hugged Sarah as she was wheeled off to the operating room.


Sarah's Mom, Dad, Don and Donna Millican, and I made our way down to the Surgical Family Waiting Area. At about 11:15, we got a call from Mara, a nurse in the OR, who said that Dr. Mathisen was going to go forward with the resection. She said Sarah was doing great and that she said a "sweet prayer for herself as she fell asleep." We all cheered to hear the news that the resection would be happening! I hope that's the last time I ever get excited that someone I love is about to have a major surgery! Mara called about every hour and half to update us on the progress of the surgery. Each time she said things were going perfectly and that Sarah was doing great.





The five or so hours we waited seemed to crawl by. After Mara updated us at 11:30, we decided to go grab some lunch since we wouldn't hear anything for another hour and half. As we were waiting for the final update, the fire alarms began to go off! Absolutely no one moved. I sat calmly but inside my brain was imagining a panicked operating room frantically trying to sew up Sarah as the smoke was pouring in through the door frames. I have a good imagination, what can I say. After a few minutes, Boston Ladder 1 showed up. I have no idea what actually happened, but it appeared to be a false alarm.





Just after the fire incident, around 3:00pm, we received a call from Dr. Mathisen. He told me that the surgery went really well. The stenosis was a bit higher than he expected which made it a little more difficult but as far as he was concerned, it was a success. What a relief! He said wait thirty minutes and go up to the Surgical ICU waiting area.





We only waited about 15 minutes in the SICU waiting area before I was allowed to back and see her. It was such a huge relief to see she was ok with my own eyes. It took all I had not to run in and squeeze her! She looked really great considering she had just had her trachea cut in half only a few hours earlier. She is on strict voice rest so she is writing everything she wants to say on a legal pad.

One of Sarah's first notes after waking up.
 





First night in the ICU.

The first night in the ICU was rough. I stayed all night while her Mom and Dad got some much needed sleep. Her overnight nurse was fantastic. Shawn (sp?) kept her as comfortable as possible all night. Before shift change, her heart rate got a bit high. It was running around 110 - 125. As soon as Shawn started, she positioned Sarah so she would be more comfortable. She also massaged Sarah's back. An hour into Shawn's shift, Sarah's heartrate had dropped into the 80's and she fell asleep. I know that is how Sarah cares for her patients. I'm glad she had a nurse who treated her so well. Sharla came in and relieved me at about 06:00.

Her first night when really well. I'll post more as she progresses. Thank you to all that have prayed, sent texts, Facebooked, cooked meals, watched kids and anymore of the countless things that have been done for us. We are overwhelmed by how God has watched over us using so many wonderful people.

Pre-op Day!

Boston was a chilly 20 something degrees this morning. We walked about a block to the hospital and were able to get a wheelchair to go to all of my appointments. This hospital is amazing and overwhelming all in one! Sweet Saint Francis needs some inspiration. Makes me want to make SFH better! Dr. M (actually his amazing secretary) had all of my appointments scheduled for me. I basically walked in, gave them my name, and they took me back. I had a series of tracheal x-rays, a chest x-ray, and met with my doctors PA to go over my history and physical and sign my consent. We grabbed some lunch at the hospital then came back to the hotel for a little rest. The PA said that there are several factors that will stop him for doing the surgery since it is a one-chance deal and that Dr. Mathisen is very careful to do it when the tissue is best ready for the resection. I hope that I meet all the criteria to go forward.

They will take me into the OR in the morning. I have to be there at 7:30 and my surgery is scheduled for 10. They will sedate me and do a broncoscopy. At that time he will check everything. If everything looks good, they will go ahead with the surgery. They will cut horizontally across my neck and remove the diseased part of the trachea and reattach top to bottom. I will be intubated with a special type of tube that I have never seen before. They will pull it back slowly as they suture everything closed until it is out. They will then place a chin stitch that is about 3 inches from my chin to my chest. That will remain for my stay in the hospital (about 7-8 days). The surgery will last for about 5 hours and then another hour in recovery before anyone can see me. The stitch will keep me from extending my neck upwards and dehissing the wound and surgical site. At the end of 7 or 8 days they will take me back to the OR for another bronch to check swelling and the site. If everything looks good at that time then they will cut the chin stitch and I will be able to discharge to our hotel room :)

I will have to stay in town for a few days to make sure I am ok. Post op includes a total of 6 weeks no talking.. Yes, I know...that is CRAZY! Jason lucked out on that one! So what this means for all of my friends is that they better talk while they can because I may not shut up once they let me talk again. I will also have to limit my neck movement during that time. Dr. M said no driving, lifting, or talking. I will diligently follow ALL of those rules. He also said that this is a 99% success rate if no Wegners shows up and I follow all the rules.

Mass General Hosp. is directly behind the brownish building and extends outward.

MGH- the beautiful tall building and all the little ones in front of it!

That is probably WAY more then anyone really wanted to know but it is a good rundown if I do get to have the surgery. If the tissue is not ready we will have to return in a few months and do this all again. It is encouraging that at all the appointments we have had today, every person has went on and on about how Dr. M is THE MAN or how he is very picky and does amazing work. It is comforting. Also, we have had so many messages and text that are making this so much easier. Thank you everyone. We are so overwhelmed with all the love we have been shown. Thank you will never be enough to express how we feel.

 We are planning on dinner at Legal Seafood with my parents tonight. My one outing :) We love seafood and several friends recommended this place in Boston. Don and Donna,  our friends, mentors, and also a elder/wife in our church, will be in this evening. We can't believe that they came to be with us. We are so blessed. Thank you all again. Hopefully Jason will be updating you tomorrow on a successful surgery...and a very sedated Sarah :)

The following pics are a few from the top of our hotel looking out! Enjoy :)

On our way..

We left the house about nine this morning. We tried to keep it as normal as possible for the kids with the exception that daddy got to take Ben to school and Aunt Natalie got to take Lizzie. The goodbyes were light for the kids, although Jason said Ben struggled on the way to school. After they left I had a little breakdown, seeing all their toys and stuff. I would be lying if I didn’t admit to having the thought run through my mind that this could be my final goodbye to my babies.  Oh, how I hope he is able to do the surgery. I don’t want to go through this again. That thought is followed with faith that whatever happens, God is good and He has provided more than we could have ever asked for leading up to this point.  He has put so many in our path that have made this load lighter… and He has given me a husband that I am sure I could not make this journey without. So, I will do my best to have faith that whatever is to come in the next two days, surgery or not, that God has a plan and He has provided Dr. Mathisen with the knowledge to know when my tissue is best ready for a resection.

As I write this we are DFW airport waiting for our flight into Boston. We had a bit of a layover here which has been nice. We had time to eat and I got to prop my foot up to help with some of the swelling. We were VERY thankful not to be boarding the flight just before ours. I guess someone got sick on the incoming flight…it took about 40 minutes for the cleanup while the outgoing group waited to board. Yuck! As if planes aren’t dirty enough. Lol. 

Mom and dad arrived safely in Boston about an hour ago. I have to laugh at mom who accidentally packed a steak knife in her carry-on. Oh mom!!!! I haven’t had the chance to talk to my dad about this incident yet but I can ONLY imagine the thoughts he had during that fiasco. Thankfully she was able to load and they traveled the rest of the way safely without handcuffs J  As for me, I was graced with the entire pat down…They were very nice about it but I did feel a few glances come my way from other travelers. On our flight from Tulsa, we got to load early and they moved our seats towards the front of the plane so I didn’t have to crutch all the way to our seats in the back. I must not have looked pitiful enough because they didn’t offer 1^st class J I am currently sporting a nice navy wheelchair with a righteous red push-bar!  Jason being the gracious husband he is, parked me with all the elderly people in wheelchairs who were waiting for someone to push them to their destination, while he took a bathroom break. I kept saying, “don’t park me over there” and he, of course, did just that and quietly laughed, moved me back a little, and walked away. Nice babe!

Well that is all I will write for now. I can’t actually post this right now so I will add to it when we get into Boston and then post from there.

*We made it into Boston around 8. We went to a little place across the street from our hotel and had dinner with mom and dad. Mom had presents for me to open since its my birthday :) It was a nice end to a very long day. I have been blessed with so many messages and texts. Thank you all for making today special for me. We are safely tucked in our hotel room. We will have lots of preop stuff tomorrow starting at around 10 and ending around 4 and are hoping that the weather stays like it is for our little walk to the hospital!

Moving Forward...One Foot At A Time

Well I have had plenty of time to update but a lack of words to write. It seems like the days are taking years in some ways and in others it seems that so much is going on that its all I can do to hold on. This post will be an update on my foot.

Ok, so we left off waiting...waiting for a second opinion and waiting for more time to pass to decide what to do. We got set up with our second opinion that led to a CT of my foot. The CT of my foot led to surgery on my foot. It seems that even more areas of my foot were out of sorts than what were initially, or even secondarily identified by my first physician. So off to surgery we went...I had a fusion with plate and pin placement on the 12th of January. I am currently going into my fourth week of being non-weight bearing. Which, I must say, is requiring much more patience than I thought myself capable of.

These pictures are from just after my surgery; you can see the pins and plate.

My childhood preacher use to always quote the Proverb "A merry heart doeth good like a medicine" Proverbs 17:22. Even though all that we have been going through has brought many serious moments we have had so many "merry hearts" around us that we have had great healing. We have also had some fantastic laughs at mostly my expense :) I want to share some of the fun!

I should have known going into surgery that I should request to be asleep the entire time and to have a muzzle. They would not be able to intubate me because of my tracheal stenosis issues so I had to have a spinal block. During my preop my nurse was telling me that I was lucky because I would have a certain anesthesiologist (won't name the poor soul) that was quite a looker..she referred to him as the Tom Cruise of the group. I wasn't sure which one she was talking about (I know a lot of them from the hospital) until I saw him. Cue..rolling into the OR...ok, so here it is...yes, he is Tom Cruise cute...but like back in his non-crazy Top Gun days.. She totally should NOT have said that to me though...did she not know that I was going to be drugged in surgery...anything might come out of my mouth! So I got my spinal and he kept me mostly asleep, waking every so often to check on me...they were good drugs but I remember a lot and I also remember not really caring. This of course led to me telling him...and probably the entire OR staff that the nurse had told me he was Tom Cruise cute...Seriously, wow...could have used that muzzle. Guess I will be dodging him if I ever see him in the unit. Totally embarrassing.

My next "merry moments" followed the usage of pain medication. I started trying to wean my meds down and started having quite a bit of pain. These "moments" came in the form of dreams. I know many have heard them but I just have to document them for laughter's sake..and I wish you all could have just sat and watched me because it would have really gave your abs a workout!

Dream #1: I was so happy to drift away from pain and off to sleep this night....It was an awesome dream. I was on a rollercoaster at about age 13ish with my cousins, parents, sister, and aunt. Now, if you know my cousin Brad then you should know the true story of my mom forcing him onto a rollercoaster at Six Flags when we were kids...it was an awful scene and it totally led into my dream. We were riding this terrifyingly terrific coaster that the buggies would detach and it was if you were going to go off the tracks. Brad was screaming like crazy, and then it would do someone elses cart. When it did mine, I of course screamed in my dream and woke up cracking up laughing like you would at the end of the ride. I was doubled over in bed laughing hysterically. It was a fantastic ride and I was ready to go again. Of course I wanted to share the awesomeness with Jason but couldn't get him awake....he missed out on that one! :)

Dream #2: This one was not so fantastic, in fact it was quite terrifying and led to me refusing anymore pain medication. I should let you know my foot was hurting so bad at this time. The stitches were pulling and I could not get comfortable for anything. I know I must have had some good drugs in my system because the munchies led to me dreaming of a Taco Bueno in the middle of the ocean that I ran into to call the coast guard and let them know that there were sharks EVERYWHERE and that they were eating people. I dreamed that there was red blood in the water everywhere and just as I had almost made it out a enormous shark with his razory teeth grabbed onto my leg. I was pulling my leg as hard a I could to get it from his jaws. Blood everywhere, me flailing...I wake, my heart racing, out of breath, trying to pull my leg from my splint. As soon as I got myself under control I woke Jason and had him turn the light on to check the splint, I had loosened it quite a bit. He obviously wasn't as concerned as he looked at me and went to turn the light back off...I said "What are you doing???!!!!!" "This needs checked!" His statement "It's too bright in here" and he lays back down and goes to sleep. So much for him helping that night :) I did end up at the doctor to check it out the next day.

My Shark wasn't as friendly as the "fish are friends not food" Finding Nemo sharks!

1 week down...the day after my shark attack!

The pain is much better now with the exception of when it swells..which means I haven't had it propped up. I am trying very hard to follow orders and let others do things that are normally my job. I have a whole new appreciation for being able to walk and get around...can't wait to be able to do things on my own again.. Especially holding Isaac and putting him, Elizabeth, and Benjamin to bed again. Hopefully only a few more weeks. We have been blessed with so many good people around us and wouldn't make it without any of you! Thank you!

My foot now- going into week 4

Poor Little Left-out Lizzie..

Looking back at past post I realize that Elizabeth has been left out on the birthday posts from this year. Of course this is an unintentional mishap but now that I realize it must be fixed. :) So, my very sweet Lizzie turned 4 this past November. I can't believe she is already 4. After many discussions on what type of birthday party she wanted (Princess, Pinkalicious, Strawberry Shortcake were among the top 3) she decided on Hello Kitty. I love doing their parties here at the house but she really wanted Bouncy Barn this year so that is what we did! We also enjoyed having family come in over a weekend to help us celebrate. Here are some pictures of the fun we had!

Jason always does a AMAZING job on their cakes!

Lizzie waiting to open presents from family.

At her Bouncy Barn Party!

Happy Birthday Lizzie!

Cupcakes and Ice Cream :)

My Beautiful 4 year old Lizzie Mae!