Suffering or Surrendering...

These were our testimonies. Lizzie was to afraid to go

through with it which was fine. Ben was very brave and those are his words.

This past Easter weekend we were asked to be part of cardboard testimonies at our church. It was such a great honor to stand on stage with so many courageous people. As I looked around and took in everyones stories or visited with people I began to feel unworthy to stand with so many amazing people but I will never pass up the opportunity to share what God has done for us. As we were sketching out what our boards would say, I quickly became very humbled and my eyes were opened to all the struggles I have had that God has so obviously brought me through...some which I think I just went on without taking a second glance to thank Him. If you haven't ever stopped and reflected on all you have been through, I highly recommend doing so. Take some time to pray about it and then spend time writing out several of your own "cardboard testimonies". Our God is so good and so faithful.

These testimonies have flooded me with many thoughts and emotions. So many times we suffer alone, quietly, and in darkness. This is exactly what satan wants. We completely separate ourselves from Gods light and the grace and the love only He can offer. Many times this happens so subtly we don't even realize that it has happened. I am sure that everyone has felt this at some point and many may currently struggle with it. The amazing thing that I am learning and hopefully will begin to use as my first response is that if we surrender to God, He WILL take over. He will work within us. What a powerful and peaceful thing that is!

This isn't to say that surrendering is easy. It takes great courage to admit we need help. It takes great courage and desire for change to be transparent in our lives. But the reward of that courage, the relationship with a God that loves us so deeply and gives us amazing perseverance and peace, is so worth it! I pray daily that I will choose to surrender and stop choosing to suffer.

2 Corinthians 1:3-4
"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles,so that we can comfort those in any trouble with the comfort we ourselves receive from God."

What a great system God designed! Through surrendering we are blessed but it doesn't end there. We are also able to bless someone else who suffers! I hope that you will take time to watch the following link. It is Mitch's sermon from Sunday, along with the cardboard testimonies. Choose to surrender and watch what God will do with you and your experiences! Love you all!

http://av1.w3e.subsplash.com/media/download/57P2D4/2012-04-08--Mitch_Sermon.mp4

A Fantastically Normal Day!

Our Picnic

It has been a while since we have had a "normal" day at our house. Some of my favorite memories so far of the kids are them running in and out of the house (which does drive me a bit crazy), running from one thing in the backyard to the next, making up games, laughing, and of course there is always SOME tears and tattling. I love those memories for them. I love how the time change, which brings more light, and the warm spring air, pulls the kids from playing in their rooms to playing outside. It seems like it has been so long since I have had the kids completely to myself on a weekday afternoon. I use to take this for granted...being able to watch and play with them was something I easily did. Things haven't been that easy for quite some time now. So today, was wonderful! The kids did it all and I got to watch and play along too! Swing set, sandbox, trampoline, TreeRings (a game my sister made up to play with them), running, playing, laughing. It was the perfect normal day! We topped it off with a picnic dinner, nothing special but the kids were excited. Jason was out of town tonight so we did miss him. I am so thankful that I get to be apart of my kids lives. They are such a blessing to me.

Isaac having fun in the sandbox

Ben playing on the swing set!

Elizabeth climbing on the swing set!

Isaac hanging out with his new pal, Loyal, and watching

Ben and Elizabeth on the trampoline!

Ben playing TreeRings!

...And some black and whites...because I am a sucker for them!

He loves his puppy!

She loves playing on the trampoline with Ben!

Look at that hair :)

Love it when he laughs...so contagious!

Has it really been a month?

Who wouldn't be THRILLED to come home to this guy???

 

Well its true! Yesterday marked one month since my resection. It is hard to believe, it seems so fresh. I am still overwhelmed looking back on everything and seeing how clearly God layed out everything for us and brought support to us. We are still receiving cards of encouragement...some from people we know and others from people we don't. I am still struggling with thank you not being enough. We have been so loved and so encouraged. Jason and I both pray that we will allow God to use us however we are suppose to be used and without holding ourselves back.

I am doing very well. Each day gets a little easier. It is soooo nice to be done with the crutches! It has been almost 2 months since that surgery. I am still in a boot for a couple more weeks. My foot is a little weak and still swells if I am on it to much but the pain is better and I am able to get around pretty well. As for my throat/breathing... I can now go up the stairs without becoming short of breath and make it through books when reading with my kids. I am still slowly increasing activity so we will see how it goes. I started driving yesterday which makes me both happy (freedom) and nervous. I am able to move my neck from side to side pretty well and it is beginning to loosen up when I nod up and down. I can't lean my head all the way back and I try not to turn from side to side to quickly. Part of it is nervousness and the other is that it is so tight. I am avoiding rush hour for now :) Hopefully I will be able to go for a massage sometime soon to help with some of that.

I started talking a few days ago. My voice is a little deeper than usual. The stenosis was 5mm from my vocal cords. I think it will probably become more "normal" with time. I can't really project my voice and my hoarseness comes and goes....all will improve with time I am sure. I still am restricted on cheering, screaming, singing...and so on. I never realized how much singing I do to my kids! Poor babies..lol, clean-up songs, washing songs, patience songs...they are all on hold for now :)  It feels strange when I swallow. Almost like my throat is moving up and down in an extreme motion. I did have Jason watch me to make sure this isn't the case! lol. It also still feels a bit swollen and I have to concentrate a little more when I swallow and my throat feels very dry most of the time. I try to keep water with me to help with this. The incision is looking better and better. The last part of the scab fell off a couple days ago. I am still having some deep tissue pain where the JP drain was but nothing so intense that I can't handle :) My energy level is improving and I can BREATH! I think my body had become quite use to a very dangerous situation....my body was use to living breathless to the point of me not even noticing it as much as those around me. Its scary. I am very thankful.

For my follow-up I will be sending tracheal series x-rays to Boston for Dr. Mathisen to review. I will do this next week. I have heard that you do this again at 3 months but Dr. M hasn't said that to me yet. Other than that I just take it slow, enjoy breathing, and listen to my body. My surgeon has a 95% success rate so I am very hopeful. I know this was a lot of rambling about how I am doing but I know that there are several others that have just been through their resections or are about to go through them and I hope that they can read this as a reference of what to expect.

Today is my first day completely on my own. I made breakfast ("made" is defined loosely ), packed Ben's lunch, dropped him off at school, attended a PTA meeting, went to Walmart, bought presents for B-day parties this weekend, picked up lunch, and just layed Isaac down for his nap (it is now noon). I am pretty tired so I will probably take a little break before continuing on with todays "to-do" list. I am so glad to be home and trying to get back into a normal routine. It is wonderful to be able to hug, hold, and laugh with the kids, to spend time with family and friends, and to be able to attend church again. I even made it up to the unit (neuro ICU) one night to visit with co-workers/friends. I am taking it slow but can't wait to be 100% again!!!

1 month ago!

Today! The difference a month makes! Love my Lizzie!

Home at Last!

We were able to come home on Thursday night. We just couldn't take being away from the kids any longer. We didn't tell them we were coming. They were playing Wii when we walked into the room. Ben jumped up and hugged me. He said its an answered prayer.."because I prayed you would come home early" (we thought it would be Friday after we weren't able to make the Tuesday date). His teacher told me the next day that he told her his prayer was answered as well. He kept it together but he looked like he could burst into tears at any moment. Lizzie looked shocked. She got up and hugged us and hasn't got far from either of our sides since. Sweet little Isaac saw Jason, said "Daddy" and started laughing and running around crazy :) It is so good to be home with them.

They have all three had lots of questions and concerns about my "ouchies". At first it was lots of looking at my throat incision and asking if it hurt. Lizzie has lectured me about all the things I am suppose to do and NOT suppose to do. She was also concerned because I am no longer having to use my crutches and asked if the doctor said that was ok. I love that little girl...she is typically not the rule follower of the house but she certainly knows how to boss everyone else into following rules! lol! In fact she just handed me my head pillow "to keep my head straight".  Ben has been telling all of his friends about my neck being cut. I laugh because of the motion he uses while telling them. It is like in an old movie when the villain looks at the good guy and does the "cut your throat" sign across the room. So funny! All of them are so tender with me and have each, independently came and cuddled up next to me declaring their love.."momma, I love you so much", "momma, I love you to infinity and beyond", "momma, I'm so glad your home". I of course, can't hug, kiss, and cuddle them enough. Jason and I have been working hard to reassure them. They are all three a little concerned that we are going to leave again.

Yesterday I was able to go to Benjamin's Jump Rope for Heart. He raised $130.00. Thank you to all who supported him. He is a great jumper! I am proud of his kind heart and how he really wants to help sick people. This is where I watched him tell his friends what happened to my neck. I was worried he would be embarrassed and asked him if he was sure he was ok with me going before he left for school that morning. He handled their questions so well. Sweet, sweet boy!

Today Jason took the kids for donuts in their PJ's. They love this Saturday morning tradition that had been put on hold. He also has an afternoon of bike riding planned with them. He is going to try to get Ben to ride without training wheels. Then hopefully, since I am still not able to participate in the action, we will have a movie night this evening and I will get some cuddling in :). Meme bought them a special movie to watch as she is here helping me.

A couple other things I want to remember are that I came home on Thursday to about 30 minutes of card opening. I can't believe the amount of people who have been there for us and prayed for us. It is still overwhelming to me. Some were from people I went to college with, some were from people from the church I grew up in, some from people I don't even know- from here or other places, some from church people here, some from family, some from friends...tons and tons of cards. Then yesterday, I got even more. You wonderful people! I have not felt alone a single step of this journey! Thank you so much!

This last picture is of Jason shaving. He started growing out a beard sometime in November when everything started unwinding for us. If you know my handsome hubby very well, you know it takes him a while to grow one. :) He shaved it just before we left Boston. He told me he thinks that he will grow it every year around that same time to remind him of what God has done for us. I love that man so much. I am so blessed to have him in my life.

Special People at MGH

I wanted to write a little about the different people in the hospital that God placed along my surgery and recovery paths.  We always pray for the doctors, nurses, and others caring for the sick. In this case I want to share their names and a little about them with you. I also wanted to write for myself, how I remember things happening. Hope you don’t mind.

Entrance to Mass General Hospital

The tallest building on back left is Ellison tower where I was.

Preop-

I can’t quite remember the preop nurses names. My time with them was very short. They took my vitals and asked questions about my health history. Don and Donna Millican, along with my parents, and Jason circled around my bed and read verses and prayed with me. It was very comforting and helped it set up a peaceful transition when they came to take me. What I do remember is that my preop nurse had been at Mass. General Hospital (MGH) for 28 years. She was very kind and reassuring that this was the place to be and that Dr. Mathisen was the doctor to be with. She had been there when Dr. Grillo was still there. He is the doctor that perfected this procedure and actually trained Dr. M. It was a comfort knowing we were finally at a place that I wasn’t the only patient with this…or the one in however-so-many that they had taken care of.

Off to Surgery-

I wish I could remember the name of the “host” as we call them at Saint Francis, I think they call them transport techs at MGH. He was a funny guy. We got to talk quite a bit. He had been in Vietnam and then served on the Boston PD as an investigator.  I want to say his name was “Don” or “Bob”. Something shortened. J He used to investigate corrupt police officers. He told me that a corrupt officer was worse than a bad guy off the streets a lot of time because they thought they were so far above the law. He had retired from that and decided and wanted to do something in healthcare. He had been at MGH for a while and nearly everyone we passed said hello to him. He told me he wanted to to write a book someday about all he had seen and done. I of course, encouraged that! Good for him! I hope he does it.

Next, he parked my stretcher in this tiny closet type thing. It was directly across the hall from what would be my Operating room (OR).  It was an opening in the wall, kind of like a little cubby with all sorts of “getting ready for surgery” things. That is where I met my OR nurse, Maura and said goodbye to “Bob”.  Oh, I loved Maura! She was young, super sweet, and explained everything. She spent a good bit of time talking to me about Dr. M, the surgery, what to expect, answering questions, and then just asking about me…marriage, kids, where I was from. I never once felt like a number or just a patient at MGH. I always felt like a person.  Maura, actually was in on my Bronchoscopy at the end of my stay at MGH as well. She skipped her break so she could go through that with me. So sweet! After Maura was done talking with me she introduced me to the resident anesthesiologist. This was another girl, she was probably a little older than me. Also super nice. I can’t remember her name sadly. I was getting a little nervous by this time. She immediately started talking to me like she had known me forever. I asked how she knew so much about me and she said “ I read your entire chart last night”. How’s that for feeling comfortable? I made me feel so much better. She placed my IV, did some labwork, and while we were waiting for the labwork to come back she placed an arterial line. Now, I have seen and assisted on dozens of A-lines being placed. NEVER, did I think I would be fully aware that one was being placed on myself.  She really did great and although I wouldn’t say it was “comfortable”, it really wasn’t that bad. After all that, I met the rest of the team (another nurse, the anesthesiologist, another surgeon) and we rolled into the OR. After a few minutes of getting all hooked up, Dr. M joined us. I can only remember them saying we are right here with you…and me saying “thank you, thank you” over and over and I guess I was out.

Waking from Surgery

Waking from surgery is such a fog and actually up until a couple days afterward my memories are the same. I remembered that Maura had told me I would only have a catheter if they were able to do the entire surgery.  So, with that, as I was waking up, I felt a little tug when they were moving me over to the stretcher. I knew that feeling, and I knew that they must have been able to do the resection. Next thing I remember was my neck being thrust forward and pillows being stacked behind it. That, and being extremely uncomfortable.

ICU

I remember voices in and out as I woke in the ICU. I can vaguely remember looking at a clock and it being either 3 or 4 something. Another indication that they must have been able to do the surgery.  I was so uncomfortable and had a newby  Jason was able to tell me more about how good to me she was then what I can actually remember. I am grateful to nurses who do an amazing job when they know that the patient will never remember what all was done for them.

Thoracic Floor

The next day I was moved to the thoracic floor. This is where I stayed for the remainder of my time at MGH. Each morning a crew of doctors and my nurse  (one doctor was one of the surgeons in on my case) would round on me. This would happen around 7:20-7:40. I was amazed at this type of teamwork and continuity of care. They met on me every morning and every one of them knew what had happened through the night or during the previous day, and they all had the same game plan.  Dr. M would come in around 2:30 later that afternoon.  I had many great nurses, Ashley, Joyce, Stacy, Kerri, Caroline, Jesse, Rick…all just names to you, but to me, I will always appreciate the time that they took to take care of me.

One nurse I have to mention specifically, her name was Nikki. She had the sweetest spirit. She spent much time comforting me when I was frustrated with myself or missing my kids. She spent time with Jason and my parents, learning about them. Sometimes, the time someone takes to be your friend is so special to you. It was like this with Nikki. She has only been a nurse for 5 months. She is a wonderful one. I did all I could to recruit her back to Oklahoma to work with me! J One day she sweetly asked me about Jason. She couldn’t believe that a husband would be that caring. Her words were “ it melts my heart to watch him with you”. That tells you a lot about my sweet husband as well.  She took good care of me physically and emotionally.

There is one other staff member I want to mention who meant a lot to me.  Typically tracheal resection patients don’t have anything to do with physical therapist. Since I was on crutches they were a little concerned with my balance since my head was stitched forward and they did not want me to pull on my throat area with my arms over the crutches. I first met Megan on a Monday. She helped me get up and walk “the loop”. This was the first time I made it all the way around. I was somewhat frustrated with myself as other patients were “looping” and passing me. She was so sweet and encouraged me that I was right where I should be. When we got back to my room my neck and shoulders hurt SOOO bad. She said she had been taking some classes in massage and she took time to massage my shoulders for about 15 to 30 minutes. She came back and did this for me on other days of my stay as well. I wish they would have massage therapy come in for all resection patients. I cannot even tell you how painful it is for your shoulders and neck. She was wonderful and took time to help me and encourage me. Things she didn’t have to do. Love her! She was another that I tried to recruit to Oklahoma J

Megan and I hours before we left Boston

Other help

I want to mention a few other people that were physically there helping me. Not staff, but family. My sweet Jason was so far out of his comfort zone but he helped me each time he saw an opportunity. He held my hand while nurses or PA’s took drains out or stuck me (something I know he can barely stomach). He helped me try to get comfortable, walk, clean up, and prayed and read verses with me. He was such sweet support. Mom and Dad were wonderful as well. That sat endless hours with me, walked with me, encouraged me, helped reposition me and helped me clean up. I am thankful to all of them. It can be very difficult when the person you are helping can’t verbally communicate and is so uncomfortable. They had great patience with me and I appreciate all that they did for me.

This is a lot of information but I want to remember the sweet people that were at the hospital with me. I hope if you are reading my blog that you are encouraged and see, as overwhelmingly, as we did, God’s hand in all that we experienced. Whether it be all those who weren’t with us but were praying or those who were with us caring for us, God is amazing, and was involved in each step.

Waiting To Come Home

We were discharged from the hospital on Friday around noon. We are back at the hotel as our instructions were to stay in town a few days just to be sure things would continue to go ok. MGH was such an amazing hospital. They told us if we get concerned about anything just to go up to the floor I was discharged from and a doctor will check me out and call my surgeon if needed. They have a million residents, PA's, Harvard students at that place. Ellison 19, the floor I was on, actually has a doctor on the floor at all times. When I developed my fever he was in my room within 20 minutes checking on me and I had an antibiotic running withing 30 minutes of being ordered. I will write more about MGH in the future I am sure. There are people I don't want to forget. :)

Things are very slow going for me. I am still having some trouble holding my head up since the chin stitches were cut. My head was in a flexed position for so long that the muscles are having a difficult time relaxing back to normal. I really have to concentrate on it and my neck gets tired very quickly if I have held it up for very long. I am also having some energy/endurance issues. Jason keeps telling me to be patient as I am still on crutches for at least another week from my foot surgery and my body has been through quite a bit in the last several months. Its hard to be patient. I am ready to be back to me :) I did however make it down the block to a little Italian place yesterday. Thank goodness Manicotti is a soft solid! It was delicious! I wasn't able to finish it off...seems my eyes are way bigger than my stomach these days. I wasn't sure I was going to make it back from that little walk..it did me in for the rest of the day. Today, we just went to a place across the street but then I managed to crutch around the block and back to our room. I think I am good for the rest of the day! It was great to get out and have fresh air. Poor Jason has been going to get food and bringing it back to me the rest of the time. He is so good to me! I tease him about being seen with me because I do get many glances... my throat cut and all...and then throw in the crutches. I am sure some good stories about what happened to me could be made up! If anyone wants to submit theirs please do! :)

My incision is looking really good and the swelling is starting to go down. They went ahead and gave me an additional week of antibiotics to be safe. I am suppose to limit my head movement for another 3 weeks. I keep forgetting to mention that we go to see my orthopedic doctor the day after we return home and hopefully that will end my 6 weeks of non-wt bearing. I am ready to be able to walk again!

This is the day before we were discharged. The red spots on my chest are 

from where the chin stitches were going into my chest.

Many have asked what post-op instructions I was given. Here are the ones I can think of:

• No driving for 3 weeks (can't turn my head to see)
• No lifting for 5 weeks
• Limited head movement
• No talking 2-3 more weeks and then work into it slowly (no cheering, screaming, or singing for awhile)
• Soft solid foods, introducing solids slowly

We are suppose to fly home on Tuesday afternoon and will be into Tulsa that evening. The kids will already be in bed. :( I am so tempted to keep them home from school on Wednesday. I miss them so badly. We have been able to Skype with them a few times, it makes me miss them even more. I know they have done really well without us and have been shown so much love. I think I may need to see them more than they need to see me :) Oh, I miss them! I am a little concerned because they have been coughing some and Isaac has had a runny nose. I don't want that to keep me from getting to be around them. Did I say I miss them?

That is all I can think of right now. I am a little anxious about leaving because I know that the doctors here know how to care for me if something were to go wrong. Dr.M must have known that would be a fear because before I left he said "I'm always a phone call away".  I keep thinking of all the verses on anxiety and worry. God really knows us! On the other hand, I can't wait to be home. To see my 3 beautiful kids, my family, my friends...and to be back at church. Thank you all again for your prayers and for following my blog. It is very encouraging to us.

Ups and Downs- but God is consistent!

Yesterday was mostly a good day but ended on a note that made me need to refocus. I have told my patients and families a million times that their stay is a marathon, not a sprint. That there will be good days and bad ones, and things can change in an instant. I have tried to comfort them in those moments of weakness. I know that all to be true but it is completely different when you are the one in that marathon or in a weak moment. I hope that I can remember these moments and take even more time for my patients and families going through these times. I know my encouragement for them will be focused differently from now on.

Yesterday started out with mom coming in and helping me get a mini shower and a sort-of hair wash! Sometimes the little things are really big. Jason came up not long after that and we all exchanged Valentines :) Throughout the day I walked (crutched) about 1/4 of a mile! I also spent most of the day up in a chair. These were big improvements for me! Before Jason left for dinner, we were able to Skype with the kids. Isaac kept trying to tell knock, knock jokes, Ben was being silly and was able to read the notes I wrote, and Lizzie kept giving hugs through the camera and asked if we could feel them. I miss them SO much. Also, my sweet friend Teresa had her bronch and everything looked great. I am so happy for her. She should get to start eating today and will be discharged this afternoon. My resection friend from California didn't fare as well, she will have to stay an extra 2 days. They were trying to change flight plans and I know it was getting expensive for them. That is on top of the normal upset of having to stay longer and be away from their kids. Please say a little prayer for them.

So going into last night I felt pretty good. Then my vein went bad. I had only had that IV for 1 day. The Vanco is so acidic. So then I got stuck my 8th and 9th time for IV access. The IV nurses keep telling me I am going to need a PICC line (a type of central line) that my veins are dying and that it will take about 9 months for them to come back. I still have 3 days/ 6 doses of Vanco left. Its a little thing but after being stuck a million times and knowing the process of a picc, it made me feel like I was going a little backwards. I have a very sweet nurse who tryed to reassure me that I am doing just what I should be and that this is day 5 and I am almost there. I love good nurses. I have had several of them. Mom and dad were here at that time and they of course were trying to comfort me as well. After everyone left I picked up my phone and had a "God's timing" text from my wonderful friend Niki. It had this verse:

"I know what I am doing. I have it all planned out. Plans to take care

of you, not abandon you. Plans to give you the future you hope for."

Jeremiah 29:11

That was followed by a text from my Jason that said "God has been shaping us for something. I trust that He will use whatever happens for good if we let him. Stay focused, your doing great, and I love you."

I am telling you, God has used so many people and things to touch me. It overwhelms my soul. I am not surprised. Just extremely touched that I matter that much to Him.

Today started a little off. They woke me at 4 for vital signs and lab work (more sticks :( I am black and blue with punctures up and down my arms). Then I got a new roommate about 4:30, so it was all lights on for that. Decided I would put my music on and blog. :) Thank goodness for earphones! Mom and dad fly out this morning. Please pray for a safe flight for them and easy transition back into normal life. I know they will be tired. Dad leaves for a work trip to San Diego on Saturday.

Thank you all for continuing to lift us up. Everyday we get so many kind texts. I feel your strength and it is such an encouragement to me. Thank you also to those of you who have sent pictures of our kids at home playing, at bible class, or at school parties. We love seeing them and know that they are being loved. It means everything to me.

I am going to end with another song. Sometimes just resting with the music it so comforting to me. Hope this one speaks to you as well. It is a beautiful song.

"Word Of God Speak"

I'm finding myself at a loss for words
And the funny thing is it's okay
The last thing I need is to be heard
But to hear what You would say

[CHORUS]
Word of God speak
Would You pour down like rain
Washing my eyes to see
Your majesty
To be still and know
That You're in this place
Please let me stay and rest
In Your holiness
Word of God speak

I'm finding myself in the midst of You
Beyond the music, beyond the noise
All that I need is to be with You
And in the quiet hear Your voice





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