Wednesday, November 30, 2011

Guest Post - Day 3, Several Small Steps

Last night I went to ICU hoping for an early room assignment. I was kicked out at 6:00pm for the shift change and returned at 8:00pm. They had not yet heard of a room but the nurses were kind enough to bring me a recliner with sheets so I could rest. I decided to stay the night with Doreen in case she got a later room assignment.

The room assignment came at around 10:00pm. I was reclined next to Doreen and the nurses got a laugh when I showed them how I could easily access the swabs (for water) and tissues that Doreen needed. They told me she had me trained well and asked that she share her secrets when she was feeling better.
At around 11:30pm we were moved to the new room. Unfortunately it was a shared room. That meant almost zero room for me, so I got Doreen settled and headed back to the lodge. I stopped by the cafeteria first to grab some food and brought it back with me to eat, then pretty much passed out. 

I had promised to return to see Doreen at 8:00am and overslept a bit so instead of cooking breakfast at the lodge, ended up going in to see her first. It was a nice, warm 24 degrees Fahrenheit as I came in. Fortunately I had remembered to bring my bandanna so I could cover my bald head and ears, otherwise I might have lost them on the way. I also brought in her spine kit and other items. She was doing well and I stepped out to have my breakfast. She was already moving to solid medications and taking her first swallows of water. She had really bad stomach cramps but we were told that is normal as the digestive wakes up, and actually a good sign that she'd be moving to more solid foods soon. 

I was able to get a chair squeezed in with a power cord so I can at least do some catching up by her side while she rests. She won't be getting much today as Occupational Therapy was already in. She not only stood this time but actually walked about 10 steps! It was great. She felt really dizzy and nauseous and had to sit. We think it's the morphine doing it so this afternoon they are planning to return after she has her pill-form pain killers so she doesn't have to use the morphine and hopefully won't get as dizzy. The plan is for her to walk some more.

She also learned more about her "spine kit" which is a bunch of instruments provided to help her with doing things without bending or twisting. She was able to take off a sock and put it back on by herself using the tools.
Her friend Karen sent a beautiful arrangement of balloons. It was a nice surprise and helps to brighten the room.
I've also been diligent with helping her do her breathing exercises. The device is pictured here (ignore the goal setting, she's been hitting 1500, I noticed after I took the picture I hadn't set it). She has to inhale and try to get the ball inside to reach a specific level. She's been doing really well but I noticed right after pain medication her lung strength is far less than without it.
I'm going to head to lunch and will share other updates as I can!
Lunch was good, I had a huge salad. I came back and Doreen was getting a little tired. The nurse gave her some anti-nausea medication and some valium to help with nerves and sleep. The therapist came and Doreen sat up and felt dizzy and had a headache. She got a little sick but the good news is her digestive system is definitely awake now so she is cleared to start on clear foods tonight - jello, juice, popsicles, etc.
She sat a bit and then was ready to walk. She stood up and amazed us all by walking all the way out of the room and into the hall. She then turned around and walked back to the bedside, then sat in the wheel chair. She sat there for about a half hour before she told me she was ready to get back into bed. The wheel chair wasn't collapsing properly so she had to walk a bit so I could wheel it out and then sat down. She did great - so two times walking today and cleared for foods. 

She is absolutely exhausted now. I am letting her rest and let her know if she was sleeping when I left for dinner, I'd just let her stay asleep. I'm going to relax a bit myself now and will check in again tomorrow.

Tuesday, November 29, 2011

Guest Post - Day 2: Leaping Forward by Standing and Sitting

Wow, what a second day! 

I left last night around 10:00pm and caught up on sleep. I walked in this morning (33 degrees, was what I would call a "brisk walk") and had breakfast then came up to see Doreen.
First thing for me was amazement at how much better she was today than last night. She was far more lucid and speaking very well. I was told she had a blood pressure drop in the evening but she has normally low blood pressure so it wasn't a big concern. I was glad to be there with her, the pain was still bothering her a bit but was better with an increased dose and she was mostly thirsty. All vitals were great. The surgeon team had visited her earlier in the morning and cleared her to leave ICU. 

Physical therapy came in and the first leap forward happened shortly thereafter. Doreen "log rolled" to her side, then sat up at the edge of the bed and then used her arms to push herself up and stand. She did it pretty much on her own with us standing by to make sure she didn't fall. She then turned and lowered herself into a chair. Her heart rate jumped quite a bit but blood pressure remained stable. She was nauseous but it passed eventually and she sat for a full hour before getting up again and back into the bed. 

I knew the instant she sat up how wonderful the surgery had gone, she was so straight and I could not see the prominent rib hump she's had nor the diagonal crease from how her waist had been twisted. Then she stood and it literally took my breath away.

I moved to Atlanta in 1996 and was at a social gathering to meet people in the local area (just friends, not a dating scene and in fact had convinced myself I was done with dating for awhile) when she stepped into the restauarant. I still remember how we locked eyes and I knew this would be the woman I wanted to spend the rest of my life with. She looked back and as she approached I remember thinking how tall she was. Before the surgery, she had dropped from her former 5'10" at the time we met down to 5'6" and was looking up at me. Not today! When she stood, I have to imagine she gained every inch back because I was looking up again. 

She was doing great after that and felt much better getting back into bed than out. I think the therapy wore her out because she started to drift off, so I left for lunch. I walked back to the lodge, ate some food there and came back. I was amazed at how much better she looked even after just an hour away. She was awake again and feeling great. 

We were just getting ready to do another one of her breathing exercises (I've been making sure she does these on the hour every hour as needed, along with pushing her pain pump) when the occupational therapist came in and informed us she'd be standing and sitting again. 

Everything was cleared and configured for this when Kelly from Dr. Lenke's team came in with X-Rays. This put smiles on our faces because her spine looks so straight. Literally from a pronounced "S-curve" with 70 degrees in the worse case to something that to me looked straight. It hadn't been measured but estimation was no more than 10 degrees.

We were elated and then went on to have Doreen stand up again and move to her chair. This raised her heart rate again and she felt nauseous again, but was also due for another dose of her anti-nausea medication. I asked her if she wanted to get back into bed but she insisted on sitting for another hour.

I then grabbed a nurse and we helped her back and she it pretty much completely on her own - we just held cables out of the way and were there to support her in case she lost balance. This exahusted her again and she started drifting off, so I took a short break and walked to a cafe to grab a drink (a caffeinated one, not a stiff one). When I walked back the clouds had cleared and the sun was shining - a nice heat wave at 42 degrees F. 

Now she is just resting and relaxing while we wait to hear about moving to a room. It's been an awesome day and God is truly great. Thanks everyone.


Monday, November 28, 2011

First Guest Post - the Big Day

Hello, everyone.

It is my honor to write this as Doreen's "guest blogger" while she is unable to post herself - I am her husband, Jeremy. This is one post but I have been writing it throughout the course of the day so the thoughts are fresh in my mind.

This morning went very smoothly. We both slept well last night (so nice when you place your trust in Him, as His yolk truly is easy) and woke up to the alarm and jumped into action. We already had things packed - Doreen had a bag with bathroom items and some clothes with lots of space for me to take her clothes back. I packed my laptop, a book, several protein bars and a bottle of water. I had a protein shake for breakfast (fast and easy) and we got dressed then called security to give us a ride to the hospital.

Security was there in a flash - the place we are staying (the Barnes Lodge) is truly a blessing. Friendly people, attentive staff, and very easy to move around the campus. We got in early and waited for the registration to open and were second up. It was straight from there to our "module" which was where she was prepped. They hooked her up and took some blood (which was nice, because it could be drawn from her central line instead of having to stick her again) and then we waited. We met the team and they were all friendly and helpful. The fellow was a little late with the consent form but that was all in order and they administered the first pass of anesthesiology.

That was funny - I gave Doreen a kiss, she gave me a smile and her glasses, then the anesthesiologist asked her if she felt anything yet. She said "no" but then immediately her eyes started drooping and she was telling them how she did not want to be awake being rolled into the operating room. They told her she would be going under and may see a bit but probably wouldn't remember it. They had her do her wake up tests (squeezing a hand, moving feet, etc.) and rolled her away.

I was told my first update would come at 9:00am so I headed to breakfast. I had just loaded a plate when the beeper went off. I just set the plate aside and rushed back to the head desk wondering why I was being paged so early. It turned out they just wanted to get the pager back because I would be moving to the 7th floor waiting area and would receive phone calls or visits instead. So I dropped it off, headed back, found my plate and paid for it and enjoyed a nice breakfast. After that it was easy to find the waiting room.

It's very cozy here - no one else is waiting so I've got the  room to myself. The wireless is good so I'm "dug in" and looking forward to the updates which I will share here. I'm actually surprised I'm far more calm than I imagined I would be ... but I've truly approached this in prayer and with the knowledge it is in His hands, and that has been more comforting than you may believe.

9:00AM Update
Received the first call. Just started surgery but everything is going well so far. Feeling good and making friends with ... the wireless (great connection here) and the coffee machine (great coffee).

11:00AM Update
Received the second call. Everything is going great. They are putting the screws in now and said it's moving along as expected. I'll call a few people with updates and then go get some lunch in the cafeteria.

Lunch was good - someone told me the South cafeteria is better than the North one and I have to agree. I got a spicy chicken sandwich. After that I realized it would be a few hours until my next update so I decided to walk back to the Lodge - it's only 5 minutes away - to drop off Doreen's items. It was a nice walk (yes, it is cold here but not raining) and felt great to get outside. I just dropped off what I needed and walked back then got settled again in the waiting room.

1:30pm Update
Thank goodness I feel relaxed and know Doreen is in great hands, so I was not anxious when 1:00pm came and went as I knew they would call when ready, and sure enough the phone range right at 1:30. Surgery is still going on as expected. Expecting another update in a few hours followed by a visit from Dr. Lenke after the surgery is done. Praise Jesus!

3:30pm Update
Received another call.  They are closing her up, waking her up, and taking her to the recovery room. I should hear final updates and next steps in the next 1 - 2 hours. It's been a long day but so far everything has gone well. I'm looking forward to hearing the final updates and seeing her.

Thank goodness for books. Been relaxing and reading to pass the time when I'm not sharing updates on the phone or email.

4:45pm Update
Saw Dr. Lenke and he told me the surgery went really well - straightened her up quite a bit and she came out well as well. She is being moved to ICU and I can visit in about an hour.

6:00pm Update - We're Done! (Or, Just Beginning...)
We're done ... I got to see her. Obviously looking rough after a full day under and on her stomach, but she was lucid and could speak softly. She got to hear her mom and dad and daughter. The only hitch I know of is that she was feeling a lot of pain after the surgery. They didn't have the push-button administered yet and were working on it. I hope they can manage it but we also know it will get a little rougher before it gets better and are ready for the road ahead.

I left due to the shift change to grab a bite and update this. I'll go back to see her tonight and then visit in the morning. The surgical team will meet with her then and determine if she can be moved to a hospital room or needs to stay in ICU longer.

Thanks everyone, been a day ...


Sunday, November 27, 2011

Final Countdown

Slept so-so last night.  I kept waking up thinking I over slept and missed my Monday 5:30a check in at the hospital.  Jeremy made a delicious breakfast: scrambled eggs with Canadian bacon, whole wheat toast, a honeycrip apple and coffee.  My last breakfast on "this side" meaning pre-op.  We are so happy to be at the Lodge where he can cook in a big kitchen.

How am I feeling right now?  Still excited but I'm ready to get this over and done with and am tired of waiting. 

I enjoyed our time at the Missouri History Museum but because I got really tired, we left before seeing all the exhibits.  I think I'm simply exhausted from all of the rushed planning that started when I got the call for the earlier surgery date.

I learned a few things today:
1.  Having the central line prevents me from raising my right arm above shoulder height without being in sharp pain.  Learned this lesson while Jeremy was trying his best to help me put on a shirt this morning.

2.  Having the central line prevents me from blow drying my hair while styling with a brush.  I can multi-task many things, but simply cannot do my hair with one hand.  Jeremy was a trooper and helped me out.  :-)

3.  Walking from the museum to the car in thirty-something degree weather is quite painful in the central line area because of shivering and tightening up my shoulders.

4.  MOST IMPORTANT LESSON!  Didja know that Press 'n Seal, you know the stuff that is like Saran Wrap, things you normally use in the kitchen... well, it makes a fabulous water barrier to cover a central line while taking a shower!  Who knew?

What's left on my To Do list:
1.  Evening and morning shower with special soap surgeon gave me
2.  Eat turkey sandwich at 10p to help with stabilizing hypoglycemia
3.  Take Valium
4.  Sleep
5.  Show up at hospital
6.  Sleep
7.  Wake up on the "other side"!

 Proverbs 3:5-6
Trust in the LORD with all your heart
   and lean not on your own understanding;
in all your ways submit to him,
   and he will make your paths straight.

I humbly ask for you to continue to pray for me and especially ask for you to pray for Dr. Lenke and his team to be well rested this evening and focused tomorrow.  Mostly importantly, please pray for Jeremy to remain strong and for God to bless him with peace and comfort.

See you tomorrow!  :-)

Saturday, November 26, 2011

Packing Pre-Op Items

Having another low-key day and loving it!  :-)  I took a pain med last night and slept like a rock.  Although I woke up at 5:30a, I fell asleep before 9p last night so I am well rested.  The area around the line is really sore but I am thankful I slept as well as I did.  I did some of my physical therapy exercises this morning in bed too. Jeremy made a yummy breakfast of whole grain waffles with rhubarb jam, a honeycrisp apple (my absolute favorite) with all-natural peanut butter and coffee.  Did I mention Jeremy is the breakfast guru in our family?  

Decided to start packing some of the pre-op items I won't be able to wear after Monday like non-button-down shirts, jeans, etc.  This will be one less thing for Jeremy to pack when we head home.  My wardrobe post-op will be button-down shirts and sweat pants for several weeks.  I took some time this morning and read through the packet of information Dr. Lenke's nurse gave me.  When I saw Dr. Lenke earlier in the week, I asked him for an anti-anxiety pill for Sunday evening.  Dr. Lenke said, "I'll give you a Valium."  Jeremy said, "Can I have one too?"  LOL!

While I'm doing some paperwork housekeeping, Jeremy is typing away at the final edits of his first book which is due, like now.  He inked his second book deal days before we left for St. Louis and he needs to start on the new book in a couple of weeks.  God is very abundant!  Hopefully, Jeremy's writing will provide a nice distraction for him from the upcoming days.

We decided to go on a quick walk this afternoon, about 2 miles, through Forest Park before it started raining.  It is such a beautiful park.  On our way back to the Lodge we saw a sign for a pub at the golf course and stopped in for a bite to eat.  It was quite yummy.  We watched Life in a Day on Netflix, interesting documentary of people across the globe who filmed their lives on July 24, 2010 and it was condensed into a film.  My back is quite sore at the moment.  Rain started and we might see some snow flurries tonight.

I snacked on some sugar snap peas which are always a yummy treat.  Dinner was veggie barley soup with a Greek salad and leftover baguette.  I also had a little dish of cornbread stuffing.  Super tasty!


Friday, November 25, 2011

Making My List & Checking It Twice

All done with the central line and it feels odd.  The entire procedure lasted 10 minutes.  I was more nervous about the line than the surgery because I was awake during today's procedure.  I could have done without hearing the doctor telling the intern what to do; just wanted to be in my own little peaceful world.  

For those who are unfamiliar with the process, an IV was inserted into the back of my hand where a "happy cocktail" was injected to relax me and then contrast was injected.  I was laying under an x-ray machine so the doctor could see where the contrast traveled up my arm and in my clavicle area.  An incision was made, a catheter was inserted and then they stitched me up leaving two wire/tube thingies hanging out of the incision.  While I'm in the hospital, all my meds will be delivered into the line which minimizes the need for me to be stuck numerous times if I didn't have the line.

It is another beautiful, sunny day and the high will be near 60.  We plan to return to the specialty grocer and pick up a few items: cheeses, prosciutto, baguette, etc. Tomorrow is supposed to rain all day so we'll enjoy watching some movies.  Sunday is calling for snow and our plan is to go to the History Museum. 

While my To-Do list is dwindling down, Jeremy's list is ramping up.

Have any of you ventured out to the Black Friday madness?  Hope you got some great deals!


Thursday, November 24, 2011

Abundantly Thankful!

Happy Thanksgiving, Everyone!

My holiday started a bit earlier than normal when I woke up today at 3:22am.  I've been waking up at odd times over the past several weeks.  As I lay in bed trying to remember where I was, I suddenly realized our room was filled with the wonderful aroma of a turkey roasting.  No, I wasn't dreaming.  We are staying at the Barnes Lodge (long-term housing for patients and their families) on the Washington University campus where the hospital is located.  One of the volunteers, Carla, came to the Lodge at 1am this morning to cook a wonderful Thanksgiving feast for everyone staying here.  I drifted in and out of sleep for the next few hours and when Jeremy woke up, he said, "Is that turkey I smell?"

Carla prepared an amazing spread: roast beef, ham, turkey, sweet potatoes, green beans, collards, rolls, mac & cheese, potato salad, stuffing, desserts, etc.  Before our meal, Carla asked all of us to form a circle, hold hands, and share something we are thankful for.  I am thankful for my family and friends, the meal Carla prepared with much love, the fellowship we are experiencing at the Lodge, the friendships I've developed with some people on the National Scoliosis Foundation group (some of whom are Lenke's patients and I was able to meet two of them), and above all, I thank God for this journey He is guiding me through.

Today was the first sunny day since we arrived here; such a beautiful day!  Jeremy and I walked for a few miles and it was so refreshing to be in the crisp, cool air.  We are at the east end of Forest Park (kind of like a mini Central Park) and decided to walk through the park.  As soon as we crossed the street to get to the park, I heard muffled music.  We were drawn by the sounds and followed it.  To our surprise, it led us to a skating rink where Christmas music was playing!  It was an ideal, drama-free day.

I pray all of you had a blessed day today.


Wednesday, November 23, 2011

Green Light!

Dr. Lenke's office just called to say the insurance company changed their mind, approved the surgery, denied just the BMP portion and I'm all set as planned!  GOD IS GREAT!  Dr. Lenke will use the BMP as planned and the hospital will pay for the BMP which costs $12,000 per unit and Dr. Lenke expects to use 6 units.

This has been an intense 24 hours to say the least.  I'll continue to submit to Him and ask for continued peace, strength and comfort.  Jeremy has been an incredible pillar of strength through all this (not just today) with such a loving, positive attitude.  I am blessed to have such a wonderful husband, a wonderful family and dear friends.


The Plot Thickens

Met with Dr. Lenke this morning who is shocked that our insurance is not cooperating.  In fact, he said he has never experienced this before.  It seems the explanation of denial was lost in several translations, but now boils down to this.  Dr. Lenke always uses a product called BMP (bone morphogenetic protein) because it provides a faster, stronger fusion for his patients.  Dr. Lenke forewarned me back in September when we met that most insurance companies deny the BMP portion of the surgery.  Washington University absorbs the BMP cost.  My insurance has decided to deny the entire surgery because of the BMP; so they are not just denying the BMP portion but everything.

What makes things more challenging for me is that we must have some sort of "surgery only" approval from the insurance company today before close of business because of the holiday tomorrow and Lenke's office being closed on Friday.  The clock is literally ticking in the final countdown.  Jeremy has escalated as far as he can on our end and now we are waiting for Dr. Lenke to have the peer-to-peer chat with the insurance company directly.

I absolutely hate playing the "What If" game, but we need to be realistic at this stage.  If the insurance just doesn't respond today with an approval, everything is off and I'm back on the waiting list for a new surgery date.

Will keep you posted.


Tuesday, November 22, 2011

Settled in St. Louis; however,

We arrived in St. Louis and are settled in.  Today was full of pre-op tests including one big surprise.  In the middle of getting my x-rays, Dr. Lenke's nurse walked in and said she was having a bit of an issue with my insurance.  Three words I was not expecting to hear from her were, "Insurance denied surgery."  That statement was immediately followed by, "You need to lay on your stomach so we can push your spine straight for the last x-ray."

I cannot begin to explain how I feel right now.  We are getting different answers from the insurance company at this point.  The insurance company told me and Jeremy that they are missing documents while they told the nurse they determined that the surgery will not benefit me.

I continue to pray that God guide me through this journey.  Will post more when details unfold.


Saturday, November 19, 2011

The past few days has been a whirlwind of activity.  I passed the pulmonary function test with flying colors, but wasn't too happy to learn I've shrunk another inch in height since September.  Total height loss this year is 4 inches.  Dr. Lenke expects I'll get most of that height back so it's all good.

It's hard to believe that in 9 days I'll be "on the otherside."  

So much to do, so little time!


Wednesday, November 16, 2011

Talk About Bumping Up a Surgery Date!

It is official, my surgery date was rescheduled from Aug 1, 2012 to Nov 28, 2011!!!!  In 12 days I will be "on the other side!"  It has been a flurry of phone calls and planning throughout the day.  My period of pre-op tests starts this week with a pulmonary function test.  I am literally beside myself with excitement.  I am incredibly humbled by the outpouring of help from friends and family.  PRAISE GOD, BABY JESUS! :-)