April - Week One Highlights

There have been some changes going on in Tuckerville and the Sugarland over the last week.

I returned to work on Monday and because I have the flexibility to work from home the transition has been smooth. I'm planning to return to the office when I'm done with rehab.

Speaking of rehab - I have only a few sessions left and on Monday I ran for three - 30 second stints. On Wednesday we bumped it up to three - 1 minute stints. I continue to walk/run on the treadmill for 20 minutes followed by 15 minutes on the elliptical machine. It's challenging but I'm motiviated when thinking back to the sick people that I shared a hospital floor with during my stay. Getting my heart rate to come down after exercise has been a problem for me so I'm constantly trying to work on my deep breathing.

April 1st was the start of Christos' lawn care contract and he's been eager to get working. In addition to his contractual duties, he has a few projects to work on again this year.

His marathon training has been going well. He has remained committed to getting his time and miles in every week. I'm very proud of him. He has a few organized runs on the calendar over the next couple of months to prepare him for Grandma's.

I rarely talk about the pups here. I should more considering they hold the title of the blog. There is never really much to say about them. These days they love laying in the sunshine on the patio steps and playing ball and chase with all the neighborhood kids in the front yard. Tucker, our cuddly yet lazy boy, has spent the last 6 years leading us to believe that he's incapable of jumping on the bed so every night one of us will pick him up and place him there and he will snuggle up between our pillows until we push him to the end. Despite our knowledge of him being able to scale the retaining wall at the park while chasing kids or jumping on the couch when we aren't looking, we believed this little white lie of his. Until recently after some serious coaxing he actually jumped on the bed. So for those of you who think he's as innocent as he looks, consider yourself fooled.

CT gets the award for the biggest changes over the past week. He's been spending morning circle time and afternoon time in the big kid (preschool) room at school and with that comes the responsibility of learning to go on the potty. Knowing that I had one final day at home before returning to work I set out to seriously start training him over the weekend. He's been sporadically using the potty chair since he was 26 months old so it wasn't unfamiliar territory for him but staying dry and not wearing a diaper was new to him. We're on Day 6 of training and it has gone very well. He's had plenty of accidents (no poo!) but Day 5 was a dry day. So I say this hesitantly....we may now be a diaper free home.

I hope I didn't just jinx myself.

His current infatuations are:
Tape. Or what he believes to be band aids
T-Ball
Hoops
Cocoa Pups (Puffs)
Dora
Dew (Drew) and Gak (Zach)

Ecstatic

The one word that swiftly fell out of the mouth of my surgeon when Christos asked him how he felt about my surgery and recovery.

"Ecstatic"

Christos took the day off and we traveled down to Mayo for my surgical follow-up with Dr. Dearani. I wish he'd let me call him Joe. Maybe he would if I asked him. He did argue back when I riled him about not wearing purple today and admitted that he was wearing purple on the day of surgery. He does not lack bedside manner or a sense of humor, this brilliant man.

Let me back up. The drive down was pretty. Much prettier than it was for my trips in October and in February. The rolling farm hills of Minnesota were starting to green and the farmers were out cleaning their crops. One of these days we'll take CT with us so he can see all the tractors along the way.

At lunch Christos spotted two of my ICU nurses and after his insistence I followed him over to their table to say hi. Their sweet faces were so familiar, but my time there is still such a blur. Their names are Ann and Jody, just so we don't forget.

I had a sundae for lunch. Because I'm a big girl and I can. And because I had a nervous tummy and nothing else sounded good.

Before my appointment we strolled the halls of unit 5 and peeked in my room. We didn't recognize any of the nursing staff but it was surreal to be back there and to see the ward how everyone else sees it. Sure I saw it while I was out on my daily walks but it was different this time. It was a reminder that the last time I walked that hall it was at a much slower pace and that I've come a long way in a short amount of time.

Dearani was his usual calm and confident self. We hit him with countless questions and he answered each one professionally and with ease. He seemed very proud of himself for the success of my surgery, and we made sure to show our appreciation for his passion and commitment to Ebstein's patients.
Things to note:

• My X-ray showed that my sternum is healed and the size of my heart is "normal". You read that right. Pre-surgery my heart was moderate-to-severely enlarged.
• He's happy with how my incision has healed and reminded me to keep it covered for at least the first year.
• He explained that in order to keep the incision low they had to stretch the higher part of my chest skin up to get easier access to the bone. Which clarified why I've been experiencing some discomfort in that area. It is scar tissue under the skin.
• He said I could be jogging now if I want. My rehab nurse is working on this and is putting me on the elliptical machine on Friday.
• I'm still on weight restrictions until at least week 6.
• I'm cleared to drive and I even made a brief trip to Target by myself yesterday. I drove the Honda. It's a manual. Driving wasn't painful nor uncomfortable, however the motion of turning the wheel and shifting gears was strange and I can completely understand now why that limitation is necessary.
• When I asked him if he was teaching his surgical technique to anyone, he explained that EA is unlike any other congenital heart defect because the defect is specific to each individual and in some cases is hard to diagnose because of this. Whereas other congenital heart defects are more identifiable. So until a surgeon opens up a patient and sees what they are dealing with, they don't know exactly how it will be repaired. I understood this answer as though repairing the tricuspid valve is an art that can't be taught. One more reason that I'm thankful he was my surgeon. He admitted that he's passionate about the tricuspid valve.

When we parted ways we thanked him for fixing me up and after graciously accepting our appreciation he threw in a comment about me being "the poster child."

In in order of importance my response was "Awesome!" with a cheerleader clap followed by blushing cheeks.

It was a really good day and I'm relieved the outcome and his response to the surgery and my recovery was positive. I told him that I hope to never see him again.

Memorializing Xander

Wednesday evening was lovely. Our families came over to help us memorialize Xander and we started a few traditions that we intend to carry out every year.

First we wrote notes with the intention of attaching them to a balloon, but the notes weighed the balloon down so instead they'll be buried with the Forget-Me-Nots from his memorial.

Despite it being overcast, we were able to watch the balloon soar to the northwest for a very long time. It eventually made it to the clouds and disappeared.

As we were finishing up with cake the sun started to set in the same location as the balloon and this is what we saw from our front step.

After a cool overcast day, we couldn't believe it so we got a closer look and this is what we saw to the northwest.

A year of healing

One year ago I was laboring in a hospital bed knowing that my baby no longer had a heartbeat and there was nothing I could do to reverse what was happening to me. I was in labor 34 hours with Xander. 34 hours of heartache and gut wrenching sorrow.

Today I sit in my recliner recovering from open-heart surgery reading the kind notes that family and friends have sent me. My heart is full knowing that people acknowledge him and our loss. That is all I ever wanted for him. I'm not sad. I suspect I'm numb. Or perhaps I've grown so much that my strength has turned me into a different person. I no longer weep for what was or what should have been. Instead I shed tears for the legacy he left. Xander gave me more in his short 16 weeks than I think some people get in a lifetime.

I thought today would come and I would need to make a big deal about the anniversary of his death and birth. But today is just like any other day. I miss him the same regardless of what day it is. I will likely think of him and that day a bit more but it is good opportunity to reflect on that time and remind myself how little control I have in life and that moving forward from that tragic time doesn't mean that I'll ever forget him.

There are still many unknowns for us in this life. What I do know is that we wish he were here and we believe he is watching over us and we will see him again someday. My heart will never be the same, nor will my spirit.

Since Xander will never get a birthday celebration, tonight we plan to have cake, release a balloon, light his candle and thank him for reminding us that our hearts are full of more love, strength and compassion than we ever imagined.

Day 25

After talking with various people over the past few weeks it has dawned on me that while everyone knows the surgery was a success, it's not exactly clear how and why it was successful.

As I mentioned prior to surgery, the goal was to repair my tricuspid valve. It was displaced and no longer functioning well at all. There was also suspicion that I had a small Atrial Septal Defect (ASD), which is a hole (or holes) between the top two chambers of my heart. This was discovered when I was one day old via cardiac catheterization in my groin. It was believed that the holes had closed up as I grew up. Since that part of the defect is not viewable by an echocardiogram, we (meaning me and my cardiac team) went into surgery not really knowing for sure. After such a long description you'd think it was a big deal, but Dr. Dearani made light of it and brushed it off as a small task. It turns out that I did have an ASD and it was repaired during surgery.

The major goal was of course to repair my tricuspid valve. During pre-op I inquired about how it would be done and Dr. Dearani explained that they would use my existing tissue (because while it didn't properly form while I was in utero, I did have enough tissue to use) along with a synthetic annuloplasty ring to form the valve. The ring is used to hold the tissue in place and to form a functioning valve. While the annuloplasty ring is foreign to my body, there is no need for me to worry about rejection and I don't have to take any anti-rejection meds for it. Isn't that amazing?

And this is essentially what occurred.

I will be taking Beta Blockers, aka blood pressure meds, for the next few months and other than Tylenol that is it. Prior to surgery I hadn't thought much about what my regimen post-op would be but I definitely didn't think it would be this minimal.

What else are you curious about that I haven't shared?

Our weekend was lovely. We spent a ton of time outside playing baseball and visiting with neighbors. CT got a new ball and "gub" (glove) for filling up his potty chart.

And finally, some purdy pictures for your viewing pleasure of my stay in the hospital and a few from when I first returned home.

In front of St. Mary's hospital on the morning of surgery. It is a stunning building. Of course we were rocking the purple. My medical staff did too. In fact my PA, Lucinda, wore purple every day I was there.

My onsite MBoA's. AKA the 'rents'

Post-op in the ICU. For the life of me I don't recall requesting to have my picture taken, but it doesn't surprise me because a) I'm a blogger. b) I wanted to document the journey. Check out all the gadgetry helping keep me alive and stable.

With my heart pillow which has barely left my side since. It's used for helping clear out my lungs when coughing and more recently when sneezing, which is quite painful.

I believe this was taken Saturday, recovery day 1, and it was my first time getting out of bed and sitting up. My lovely nurse was combing my hair.

Still completely doped up but looking pretty darn good for recovery day 2 in the ICU.

Recovery day 3 - Out for one of six required walks with my Dad and Doreen. Notice my awesome socks.

Moving slowly with my nurse Nathan and Doreen.

I pretty much wore my hair in braids around the clock the first couple of weeks.

Mostly likely Facebooking.

Snuggles with CT upon returning home.

All tucked in for bed. This is how I've slept every night since.

3 Weeks Post-Op

The first week is a blur. The second week moved at a steady pace. And the third week has flown by.

I keep hearing how surprised people are to see me out and about and how great I look. And to be honest, I'm also surprised. I continue to feel well and am recovering at a steady pace. I know I'm not back to 100% and that I likely feel well because most of my day is spent relaxing and on the days when I don't get as much relaxation in I can feel the fatigue.

People have been asking me if I notice a difference. At this stage, I believe I can feel a difference. Before surgery I was functioning at 78% oxygen and I was overcompensating and pushing myself to reach 91% output. Being out of breath after walking up the steps was normal for me. I had never thought anything of it. And now when I walk up the steps I'm not out of breath. I may be fatigued but that's because I'm in recovery mode and I anticipate that once I'm fully recovered I'll really notice a difference and I won't be so tired from overcompensating what my heart couldn't do on it's own before.

When we met with the surgeon, Dr. Dearani, last fall he asked me to grade how I felt energy wise. I gave myself a B- knowing that I wasn't functioning as well as I had in the past or as well as other people with healthy hearts. He said he would do his best to make me function at at least a grade better than that but since I was already functioning at 91% output that I may not notice the difference. At 3 weeks post-op, I'm pretty sure I can already notice the difference.

The weather has been outstanding this week and it has been refreshing to get outside with the pups and CT nearly every day.

Christos bought us a bird feeder for Christmas. Since there wasn't snow and the ground was hardly frozen, we put it up the following week. We've been waiting and waiting for the birds to discover the feeder and just this week they have. It's right outside the window about five feet from where I spend a lot of my day. It's been nice listening to them sing. Spring is near but I won't be surprised if we get another cold front before May hits.

Rehab is going well. My speed and mets are increased each session as long as I am comfortable with it. Which so far I have. I've cut back significantly on my pain meds this week and I've started to feel some new things. The PA (Lucinda) who assists my surgeon and oversaw my care in the hospital called to check in on me today and reassured a few concerns I had. One being a pinching and tugging high on the left side of my chest. For records sake, she said it is likely scar tissue that is forming and the discomfort could last for weeks or even months but can be managed with Ibuprofen. Which I haven't been allowed to take due to risks of bleeding post-op. It was nice to get a follow-up call since I had just been reminiscing about my hospital stay after receiving an explanation of charges from Mayo in the mail today. Yikes.

The pictures from my hospital stay have made it off of my camera. Please hold me accountable to get them posted here. They aren't anything exciting, but I'm sure those from afar are curious.

I'm off to enjoy this gorgeous weather.

Day 20

I definitely haven't held up my promise to myself and to my readers of posting regular updates of my recovery. The truth is that there isn't really anything exciting worth sharing. My recovery has been smooth. Easier than I anticipated with no unexpected setbacks.

I'm a few days shy of three weeks post-op and I'm able to do most things myself now with the exception of my weight limitations and driving restrictions. My pain could be better categorized as discomfort. I weaned off the prescription pain meds over the weekend which I'm glad for. They caused mood swings that became more obvious during the detox process. I can still feel my sternum trying to heal. I notice it most when trying to reach behind me and while getting dressed. I attempted to sleep in bed last night after a successful nap in the afternoon but I couldn't find a comfortable spot. Laying nearly flat caused a lot of pressure on my chest and it felt suffocating so finally at midnight I resumed my spot on the recliner and discovered how much more comfortable it really is at this point.

When I left the hospital my incision was 75% healed and for the last week and a half it has been 95% healed. There are just a few stubborn spots that are taking their time. Kind of similar to a newborn umbilical cord. It's become more of a nuisance than anything.

I started cardiac rehab last week and it's more basic than I expected but I see the benefit of it. If not for getting my butt back in to exercising then simply for the fact that my recovery is being followed by a medical professional on a regular basis. So far my rehab routine consists of walking on the treadmill at a slow pace for 20 minutes and riding a stationary bike for 15 minutes. While I'm there the time goes quickly and the exercise seems fairly simple but when I return home I'm usually pretty exhausted. It's a reminder of how much my body and heart have endured over the past few weeks.

I have been overwhelmed by the amount of support and well wishes that I've received and continue to receive. I hardly know where to start to express my gratitude. I have gotten cards and texts and emails from all over and from people I haven't seen in years. And for those who have stopped by to visit and bring us food and love...well it all all has been so heartwarming and as an act of appreciation I promise to pay it forward when the opportunity arises.

The joys of motherhood

Yesterday my heart was full of fear and pride all at the same time.

If it looks to you like he didn't have a choice in the matter, you are wrong. After seeing one classmate willingly jump off the diving board he was quick to be next in line. I didn't know whether to scream or cry.

Day 13

Today didn't go quite as I expected. After having many good days in a row, I woke up on the wrong side of the recliner this morning. At my check-up yesterday I got the pneumonia vaccine, because going forward as an open-heart patient I will now be in the vulnerable category. Aside from turning into bed at an early hour last night, I was feeling pretty good. I woke up to an extremely sore arm from the shot site, so sore that I can't lift it above my head and it was accompanied by flu like symptoms.

So I didn't do much today. Maggie came to spend the day with me. I managed to get a shower in but it left me so exhausted that I decided to not go to my first day of cardiac rehab.Hopefully the chills and aches will pass by tomorrow so I can muster up some energy for rehab on Friday.

The good thing is that I don't need the vaccine again until I'm 65.

Day 12

I want to take a few sentences to give an enormous virtual hug to everyone who participated in the Wear Purple for Mandy event on the 24th and the days following,  and also to those who sent cards and texts with encouragement and support. Going into surgery I had brief moments where I thought it may all seem so silly in the end, but I can say with 100% certainty that the support and love I've received over the past few weeks has guided me to a really good place in my recovery.

I also can't deny credit to my sister who has taken on many different roles throughout this process and she's done so with worry in her heart but a smile on her face and I am eternally grateful for her, As a stay-at-home mom who works a part time job, she took on these tasks as though they were a full time job and she did them outstandingly well. Cory and the boys get some credit here too since they helped keep CT entertained and on schedule during the days were we away.

To my parents and Christos' parents who stayed by our side starting with dinner the night before surgery and through the weekend. Thank you for holding our hands through this and for guiding us during a time our marriage where for better or worse was challenged.

Which leads me into my heartfelt tribute to Christos. My heart explodes with love and gratitude for this man. So much more than I ever thought possible. We have been in the depths of sorrow, the highest of happiness and now I can say that we've trudged through some really difficult times together and we moved on from it a stronger couple than I ever thought possible. Christos' commitment to my care and recovery has exceeded all my expectations (I didn't have many doubts). From what I hear, he didn't leave my side while I was in the ICU. He was there to catch me when I fainted in the shower at the hospital and since returning home he has been waiting on me hand and foot. Literally. He tucks me into my recliner at night and lays an extra quilt over my cold feet and tucks me in until I can't move. I know he is exhausted, and his marathon training has taken a back seat, and as soon as I can start picking up some of my own slack I will make sure that his outlets and passions get back on track.

Where am I today?

Many parents at daycare were surprised to see me at drop-off and pick-up today. I had my initial cardiac rehab appointment and check-up this morning, so my mom and I dropped CT off at school. After an afternoon siesta, I was ready to feel the 50 degree sunshine again so I ventured out with Christos to pick up CT. It felt good to be out. Other than watching CT"s swimming lessons last Saturday morning, I haven't left the house since returning home last Wednesday.

When I was discharged from the hospital I had a slight collapsed right lung which was uncomfortable. They were still working through my beta blockers (blood pressure meds) so that my BP wouldn't drop so low that I'd end up on the floor of the hospital bathroom again. I'm still sporting a bruise from that fiasco. The echocardiogram showed 'trivial' leakage of my tricuspid valve which both my surgeon and cardiogologist were thrilled with. It's quite amazing to think that for 34 years my heart was working overtime to pump blood and now it can finally function as it should.

I don't recall much about being in the ICU and that of which I do it is not pleasant. I applaud the drugs they use that help erase the memory of that time.  My pain has been manageable. It never went above a 5 while in the hospital and only one day since returning home was I uncomfortable but I quickly learned my lesson with skipping a dose of pain reliever. All of my discomfort is from the sternum trying to heal. My incision and drain site are almost completely healed. Which is so much faster than I expected.

Tomorrow I'll started cardiac rehab 3 days a week for at least 4 weeks. I'm fully expecting to be working out with people twice my age. From the 10 minutes that I did on the treadmill today, I know it will be hard, but I'm ready to get the show on the road. (We've added these appointments to the Care Calendar so if you are available to take me, I'd love your company.)

There is so much more that I've wanted to write about but for now I'll stick with these basics. Hopefully I'll get around to going through some of the pictures we've taken so I can share them here.

Thank you to everyone who has prayed, sent your well wishes and encouragement. I have been overwhelmed by the support and it has inspired me in so many ways.

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!

Becky

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!

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!

Becky

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!
 
 

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!

Becky

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...

Success!

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 http://www.facebook.com/events/108061712656296/ or you can email it to me at paape04 at comcast dot net and I will post it for Mandy to see!

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,
Becky

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.

Purple

I am so excited about this!

Wear Purple for Mandy!

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.

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 there...do 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.

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.

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.

Ready.Set.Go.

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.