Wednesday, February 29, 2012

Home Sweet Home!

I will no longer by hijacking my sister's blog as she is HOME!!

They arrived home earlier this afternoon and were reunited with CT, Tucker and Sugar!  All of whom were happy to be at their own home after 6 days at mine!

I am sure she will begin updating on her own very soon!

One last thought before I sign off for good.   I have the most amazing brother-in-law ever!  Words cannot describe what I have seen him do for my sister the last 6 days.  He deserves much credit for Mandy's quick recover and homecoming!


Tuesday, February 28, 2012

Two steps forward and one step back

Talked with Christos on the phone this morning and things were looking good!  She had eaten some breakfast and already had her chest x-ray and EKG done.  They were just waiting to hear the results from those tests.

A little while later he texted me that the chest x-ray was good and the spot that had collapsed was smaller then yesterday.  Her EKG was great!  They were going to be discharged if she could have a bowel movement ( the one last thing almost everyone has to do before they ever get discharged from the hospital :))

About an hour later, he texted me again.  She had gone for a walk, tried using the bathroom and decided to take a shower.  All of the activity and her blood pressure medications made her dizzy in the shower and she passed out.  Luckily Christos was there to catch her and she wasn't hurt.  The Physicians Assistant who has been monitoring the entire time she is there decided they needed to adjust her meds and continue to monitor her one more night just to be sure.

Tonight they were able to Skype with CT again!  CT continues to be his joyful, loving self while his mom and dad are gone.  I was sort of afraid seeing them on the computer would make him upset or sad, but he really just chats for a few minutes and runs off to play again with Zach and Drew!

So, tomorrow is a new day and hopefully will be Mandy's homecoming!

Monday, February 27, 2012

Small set back

When I chatted with my dad on the phone this morning, Mandy had had a good morning.  She had eaten some breakfast and taken another walk.

Sounded like she had gotten some sleep, but poor Christos slept in a recliner in her room and not sure I can say the same for him!! 

Mandy's dear friend Doreen headed down this morning and was spending the day with them.  I was so glad she would have some other company to visit her and keep her spirits high.

Didn't hear anything from them all day but figured she was doing well.  When I got home from picking CT up from school, she had posted on FB!  I was so excited to see a picture of her and Doreen. She look great!

She had gotten a shower and even a massage today.  But to my surprise she had posted that she was bummed that her anticipated departure date ( Tuesday) was adjusted due to hear having a collapsed lung.  I quickly called Christos to see what was going on.  He said they had done an x-ray and discovered it.   It can be a complication from them removing the breathing tube.  Tomorrow they will do another x-ray and EKG.  Still hoping her discharge day is only postponed until Wed. but now with this impending snow storm we are supposed to get Tuesday, into Wednesday I would be less stressed if they had to keep her one more day!

CT finally got to Skype with them tonight!  It was short, but I could tell they were all glad to see and talk with one another.  Even though I had just seen her yesterday, it was so great to see her smiling face today!  It is amazing what a difference a day can make!!

Hoping for more great news tomorrow!


Sunday, February 26, 2012

Making progress

I was so happy to be able to take the day and drive down to visit Mandy with Christos sister Maggie.

She was very tired when we got there as she didn't sleep well last night.   She had been sitting in the chair before our arrival which also takes some of her energy.  She was still in ICU, but they had removed her catheter.  When we were with her they were getting her ready to remove her IV lines that were in her neck and her chest tube.  I went to grab some lunch with my parents and Christos parents and when we came back both of those were removed and they were just waiting for a regular room for her.

Once she got moved to a regular room, she was still suffering from nausea and dizziness.  Both from the meds and I think from being wheeled from one room to another in a wheelchair.  She has been eating jello and popscicles.  She has been hungry but it is hard for her to think about eating anything.  We just spent our time letting her rest and a little bit of small talk. 

By the time we left, she had been able to use the bathroom and even went for a short walk.  As I am writing this, Christos let us know she went for another small walk this evening.

She has an "irritable heart" which is to be expected after someone messes with your heart for 2 hours.  But it causes her monitor to go off occasionally, especially after activity and it makes Christos nervous.  The nurses in the new room she is in were amazed when she came in with NO tubes, or even IV's hooked on her.  Just breathing some oxygen through a nasal cannula.  When we would walk the hallways, most of the other people were hooked up to lots of machines while walking around!  

I am so grateful I was able to go and visit her today. I can not say enough how great the hospital staff has been to my family and in caring for her.  It gave me great peace of mind knowing how well she is being taken care of and even though she is still very uncomfortable, she is so strong!

She is an amazing women and proud just does not describe how I feel about her being my little sister!


Saturday, February 25, 2012

Here is the update from Christos this morning:

Mandy is doing great!  Christos was able to go to the hotel to sleep last night.  He was back with her this morning and she has been responding to him.  He said it is like playing charades trying to figure out what she needs.  She was trying to tell them to take a picture of her and it took them awhile to figure it out!

The breathing tube came out at around 9:30.  She was very ready for it to come out.  When the doctor asked her how she was she replied "shitty" and he took that as a good sign. I was glad to hear she had such a feisty attitude already!!

She is still very sleepy and out of it but everything is looking good.  Her throat is sore and she wants water but can't have it for awhile. 

That was the latest update from him around 10am.  She is expected to stay in ICU for today and hopefully move to a room tonight or tomorrow.

I would expect that today will not bring much more news, but will update if there is anything to report.  No news is good news in my book!


Friday, February 24, 2012

Evening update

Not sure exactly what time my family first got to see Mandy, but it was sometime this afternoon.  She is doing really well.  They still have her sedated and she still is using a breathing tube.  They are talking about removing that maybe later tonight and then keeping her sedated so she can rest until morning.

Christos has been with her and she has been responding to his voice and touch.   When I spoke with my dad this evening he said her color was good and her body was warming up more.

It has been a long emotional day, so we could all use some good rest tonight.

Until tomorrow...


Mandy's surgery went great!!  My family spoke with her surgeon around 12:45pm.  The surgeon said everything went amazingly well!  She is at better then average function.

At that time, they were closing her up and my family expected to be able to see her in a couple of hours.  I haven't heard anything from them since that time.

Again, I can not say enough thanks to everyone who has contacted me, posted on FB, sent emails, text messages,etc. to show your love and support.

We are truly blessed!

Here we go!

Texted with Christos this morning.  Mandy checked in around 7am.  She was able to hang out with the family until around 8:40, when she had to go back from pre-op.  They sent her on her way and she was very nervous so the staff gave her a pill to help her relax.

We anticipate surgery will begin around 9-9:30.  Then we just wait.  I don't anticipate getting any updates while she is in surgery, but if I do, I will let everyone know!

Surgery is anticipated to last 4-5 hours. 

Dropped CT off at preschool this morning and the amazing staff their asked their families to have their kids all wear purple today!!  So blessed he is in such a loving environment.   

If you are wearing purple today, don't forget to take a picture and post it on the FB page or you can email it to me at paape04 at comcast dot net and I will post it for Mandy to see!

Thursday, February 23, 2012

Pre-Op update

Wanted to give everyone an update on Amanda's pre-op day.  She and Christos left home around 5am this morning to get to Rochester for their first appointment at 7am.  They were forecasting snow for the area, but luckily it went elsewhere so that wasn't anything else for them to deal with.

Here appointments went well and she said her surgeons were very confident and put her mind at ease about tomorrow.  They did give her some idea of timing.  She will check in for surgery at 7am.  Not sure exactly when surgery will start, so I will update that tomorrow as I know more.  They said that from the time she says goodbye to Christos until she sees him again should be around 5 hours.  During surgery she will be on the bypass machine for approximately 2 hours.

She did tell her surgical team about Wear Purple Day and told them to wear purple too.  I am really hoping some of them wear purple scrubs! 

Tonight she was going to eat dinner and could even enjoy a glass of wine.  She can have no food after midnight but can have water or coffee in the morning.  My parents arrived in Rochester around 5pm and Christos parents were on their way there. 

We were able to Skype tonight around 5pm together!  CT and my boys thought it was pretty cool to be able to see & talk with Mandy and Christos via the laptop!  CT is doing great and enjoying lots of playing "hoops" with Zach and Drew. 

They are both very tired from lack of sleep last night and the long day they had.  I am hoping they can both get some good rest tonight, as Mandy is able to take a sleeping pill tonight as well. 

I will post tomorrow as soon as I have any information! 

A HUGE thank you to everyone who has called, emailed, or sent messages via FB.  I have been emotionally overwhelmed all day and I am not even the one having the surgery.  I know Mandy can feel all of your love, thoughts and prayers!

Good night,

Wednesday, February 22, 2012

Creature of Habit

I like knowing what to expect from day to day. Our daily routine rarely changes. Even the dogs know it and when something is off they are alert. Keeping a routine help keeps my anxiety in check. And then a change in routine happens and the anxiety creeps back in. That's where I am today.

I've spent that last 24 hours going through the motions and in the back of my head thinking this will be the last time for a month that I'll be able to do this. Like putting CT to bed last night. That was tough.

I imagine I would feel differently if I were escaping on a month long vacation and the change in routine would be something pleasant.

It's little things like a change in routine that remind me how comfortable our life is.

How am I doing?

I'm anxious and I have a constant lump in my throat. I think that's pretty damn good considering what is on the horizon. The anticipation of leaving our routine, leaving CT and the pups is weighing on me. And I'm going to miss them desperately as well as the creature comforts of home.

I know there are things that I want to accomplish today and at the moment my mind is in a fog. I'm sort of stumbling through trying to check things off my lists before they blend into the next task and get lost forever.

It will get done. And if it doesn't, oh well. My lists are simply tools to make me feel like I have control of the situation.

What's the plan?

Starting tonight, CT will be spending the week with the Becky, Cory and the boys so Christos and I can get up early to make the 2 hour drive down to Mayo in time for my first pre-op appointment at 7am. I've tried to keep CT's schedule as normal as possible. He'll continue to go to school during the day.

I have test and consult appointments all day tomorrow. We'll be spending the night in a hotel across the street from St. Mary's. I check-in with admissions at 5:45am on Friday. I don't yet know when surgery is scheduled for, I'm assuming I'll get more details at my surgical consults tomorrow. I also don't know how long surgery will last. The few people I've spoken too all had different length surgeries ranging from 2 to 5 to 10 hours.

I expect to be in the ICU at least the first recovery day. Hopefully no longer. I have my sights set on Wednesday for discharge and the road trip home.

Thank you for your encouragement and prayers. I feel the love and I'm humbled by your support.

Monday, February 20, 2012


I am so excited about this!

Thank you Mols, Kel and B!

If there is one thing that you could do that would help lift my spirits, it would be to wear purple on Friday and post a picture of yourself to the event wall. Many people who don't live near me have said they wish they could do more. This is a fun and easy event that everyone near and far can participate in and you can be absolutely sure that I will love and be inspired and humbled by the support.

Throughout the past few weeks I've been trying to find things to look forward to post-op because I know a lot of it won't be pleasant. And let's be frank, the past year of my life has been pretty difficult so I'm scraping to find positive things to focus on. And now I have something to look forward to when I wake up from surgery. I'll get to see all the beautiful smiling faces of my family and friends. Awesome!!

It is a public event so even if we are't friends on Facebook, you should still be able to participate. And if you aren't on Facebook, you can email your picture to mollyconley77 (at) yahoo (dot) com and she'll post it to the wall.

For those of you wondering how you can get updates on the day of and the few days following, Becky will be posting status updates on the event page and my blog on the day of surgery and during my stay at the hospital.

Monday, February 13, 2012

T Minus 11 Days

Thank you for the awesome song suggestions. I'm so excited about them!

A few others that I received via email were You Light Up My Life from my Daddy-O, Good Vibrations by the Beach Boys from my Mom, and I've got the joy joy, down in my heart and Be Careful, It's my Heart by Bing Crosby from Nancy. I need to get started on my play list.

Where am I today? Telling more people is making it all sink in and feel more real. Over the weekend some familiar anxiety started to make itself known. I'm optimistic 95% of the time, which for a traditionally glass half-empty kind of gal, 95% is pretty damn good. There are still some concerns that are normal, you know like the whole being cut open and broken in two part. Yeah, that is weighing on me pretty heavy right now. As I sit here and write this I feel completely fine and healthy and yet I know in 11 short days I'm walking into something that is going to significantly slow me down for a period of time. I'm thankful that I know that this is temporary and I'm hopeful that by the time spring rolls around I'll feel like I do today.

Has anyone heard about those crazy freak stories about people who are under anesthesia and feel everything but can't speak? Yeah, this is a current crazy anxiety filled thought that I have.

I'm also having a hard time coming to terms with knowing that I likely won't see much of CT while I'm at the hospital and once I return home I won't be able to care for him in the way I do today. Again, I know this will be temporary, but imagining what that time will be like is heartbreaking (no pun intended). If anyone has any suggestions for how I can maintain a close connection with him during recovery, I will gladly accept them. I'm not above bribing him with new tractors and candy in exchange for affection either.

Ok, now for some logistics.

My sister, Becky, will be posting updates here and on Facebook while I'm in the hospital. I hope to be able to post updates myself once I return home. If we aren't friends on FB, check here first. If you aren't friends with Becky on FB, she'll be tagging me on her updates so you can go straight to my wall.

I've added two new tools on the right navigation bar > over you see them? The first you can add your email address and get email alerts when new posts are added. This is a feature I've never used before so I hope it works.

I've also added a link to my Care Calendar where those who want to help can sign up. Becky will be adding needs once I get direction from the hospital. (i.e. rides to and from appointments, meals.) It's awkward for me to ask and I wish our level of needs were limited to simply prayers and well wishes, but the more I'm learning about this process and recovery period the more I'm beginning to realize how we will need to rely on support outside our family.

Thursday, February 9, 2012

Shared Experiences

Over the past few days I had the opportunity to sit down and chat with two former open heart surgery patients. One had an aortic valve replaced three years ago after having an undiagnosed murmur suddenly be heard at a doctor appointment. The second was born with EA and has lived a normal active life and had a tricuspid valve replaced at Mayo by Dr. Dearani a few months shy of two years ago. Both had small children at home and were in their mid-30’s.

I am so grateful for these connections because they were able to share with me many of the things I've been curious and concerned about and so much more.

They both had very specific memories from their recovery. Some good and some not so pleasant but their stories are real and gave me a glimpse into what I can anticipate. There were a lot of similarities between our three stories, but their experiences were individual and I expect mine to be as well.

I can’t lie. A lot of what they shared with me was frightening. As optimistic as I am trying to be, I know that there may be hiccups along the way and I think I’m a more mentally prepared for them now than I was before hearing their stories. Pray I don’t have some wacky complication that I’m not mentally prepared for.

They didn't sugar coat anything and I completely respect their honesty. They shared everything from pain to pooping and all the fun stuff in between. Both showed me their scars and were proud of them. Right On!

We covered a lot of area and below are a few things I want to make note of that stuck with me in the days following.

  • Since my sternum will be broke to allow access to my heart and then wired shut to allow it to heal, a significant amount of my discomfort in the weeks following surgery will be from pain in my bones, muscles, & joints trying to support its healing.

  • A-fib (Atrial fibrillation - I’m workin’ on learning all the lingo) hurts like crazy and if it can’t be controlled by meds a pacemaker may be needed. Yikes.

  • Physical activity as simple as walking will be a challenge and I’ll have to re-condition my heart and muscles.

  • Constipation. Nuff said

  • Sleeping is going to suck for the first few weeks. I’ll have to sleep on my back either sitting up or propped up.

  • Depression. I’d never heard this before but both people mentioned it. There is a link between cardiopulmonary bypass and depression. Noted. I can see how not being able to participate in daily activities like holding their child can really drag a person down too.

  • My appetite may be non-existent for a while. One person lost weight while the other gained weight from all the fluids and meds.

  • Weight and Driving restrictions – I won’t be able to lift anything over 5 lbs or drive for at least the first month. This includes CT AND a gallon of milk. I guess I need to downsize my purse, huh?

Thank you Eric and Lauren for sharing your journey with me and for being open and honest. Time will tell what my story will be.

Monday, February 6, 2012

Theme Song

I've had theme songs in recent years to help me get through some difficult time. I think this life event qualifies for it's own theme song. Don't you agree?

Share with me your ideas of what my theme song should be. If I can't settle on one song perhaps I'll make a play list to take with me to the hospital as a reminder that you're all thinking of me and cheering me on.

If Don't Go Breaking my Heart by Elton John and Kiki Dee is the first song that comes to mind, you'll have to think of another because it's already on the list. *snicker*

Honestly though, I'm looking for something a little less kitschy and a lot more inspiring, meaningful and uplifting.


Sunday, February 5, 2012

Tick Tock

I've had every intention of publishing the draft posts about September through December that I've started and never got around to. Alas, life is going at a constant speed and now there are things that I really need to share.

This will be duplicate information for many of my readers. For documentation sake, I'm putting it all here again so I can look back on it and see where I was at the time.

*deep cleansing breath*

Most of you know that I was born with a rare congenital heart defect called Ebstein’s Anomaly. In a nutshell, my tricuspid valve did not form normally and is displaced causing my right ventricle to be smaller than average. The tricuspid valve does not properly function and regurgitates blood back into the right atrium (rather than the pulmonary artery). This past fall my retiring cardiologist referred my care to a new cardiac team at Mayo clinic. After undergoing days of test and consults, the diagnosis revealed severe blood re-gurge into my right atrium and moderate-to-severe enlargement of the right side of my heart. I feel fine, I’m not in any pain and I’m showing no major outward symptoms of heart failure. I could continue at this stage as I have for the past few years, however based on the fact that I’m not currently in heart failure, I’m still young and healthy and that we may try to expand our family, they recommended that my tricuspid valve be repaired via open-heart surgery sooner rather than later. Why, you may ask, was this not ‘caught’ by my previous cardiologist? It was. My condition hasn’t changed much over the past few years. He kept a close eye on me and warned me that when he retired and transferred my care to Mayo that their treatment plan would likely involve surgery.

When I was born there were no medical interventions for patients with EA. I’ve been lucky to lead a normal, surgery free and fairly active life. They have been developing this procedure for close to 40 years so I’m grateful that there is an option for me now and am equally grateful that a top-of-the-line medical facility is located so close to home. Mayo is amazing. My new cardiologist, Dr. Sabrina Phillips, is world-renowned for treating women with congenital heart defects and the thoracic surgeon, Dr. Joseph Dearani, is quite possibly one of the top surgeons for repairing EA. They were both confident in the success of this treatment plan and their bedside manner put me at ease.

After much contemplation and soul-searching, I decided to proceed with having the surgery in 2012. Every day I thank my lucky stars to have been given this choice, and while ultimately the surgery was inevitable, I’m grateful that I’ve been granted time to process the news and prepare for the surgery.

As you can imagine, I am feeling every possible emotion and this has not been easy to digest. I trust that I’m in great hands at Mayo. I’m trying to soak up the days that I feel well now because I know some rough days are ahead. I have heard that we should learn to ask for help when we need it. I know people will offer to help and I’m not sure I’ll know what to say when the time comes so for now I ask that you keep me, Christos, and CT in your thoughts and prayers. The pre-op anxiety has already started so I ask that you send me strength and patience during the wait. It wouldn’t hurt to start hoping for a smooth surgery with an outcome that we are planning on. (i.e. a repaired valve vs. a replacement, no infections or complications, smooth recovery). And
whatever else you think could use some prayer and thought at this point.

Surgery is scheduled for Friday, February 24th at St. Mary’s hospital in Rochester. I’ve been told I will be in the hospital for 5 days with a 6-8 week recovery at home.

If you’re interested, you can read more about EA here or watch a video of my surgeon talking about it here. I’m happy to oblige any questions regarding my condition or the surgery.

Stick around. I'm sure there will be plenty more to share.