Post Op Day 1

Just a quick update from me. I'm feeling pretty good. Today has been a big day as far as having drains and lines removed. I had some problems with nausea and vomitting this morning but that seems to have been caused by some of the pain meds. They switched up the pain meds and I am feeling much better. Thanks for all the support so far! 

Post-op Road 2 via Brin

Wake up/extubation phase was supposed to take about 6 hours. In true Deanna fashion, she did it in 3. 

Around 4pm Mom and Matt went into her room (when the ridiculously limited visiting hours allowed us to do so again) Deanna was wide awake and waving, writing jokes on a note pad (as she was still intubated). We were elated! 

The nurse said 'in 8 minutes I will extubated you, I just have to draw some labs.' Well in 8 minutes on the dot she calmly signed to us all, pointing to the clock and hitched her thumb over her shoulder... 'Time for this tube to come out!!' Then she smiled for a picture. 

They gave us the boot for the extubation, and we've been back and forth since. She is still partially sedated for comfort purposes but is able to visit for short periods. She's struggling with some nausea so we're letting her rest and in the mean time, bickering over whose staying over. We've made beds of the benches in the family waiting room as Deanna's night nurse has encouraged us to stay. 

Her spirit is uplifting. Today was a roller coaster of emotion but could not have gone more smoothly. We can only hope the smooth sailing continues and are enspired by her determination!

Post-op Road via Brin

Deanna - 1, Congenital anomaly - 0!! She's out of the OR and in the OHU. Still intubated and sedated, but she made it!!

JBT is confident with his decision to repair HER valve and not use a cow valve. The aortic root was replaced as planned and the repair of her valve will give her 20-40 years before needing another surgery as opposed to the 15-20 a cow vavle would have.

The plan is to wake her up slowly and have her extubated by tonight. Her drains will start to come out in the morning and she can be up in a chair then. Depending on how she does she will leave the ICU and go to a regular cardiac floor. 

The relief is almost overwhelming. Can't wait to see her eyes and hear her voice. Let the recovery process begin!

Surgery Day via Brin

Deanna has been taken to the OR.

She was in good spirits when we left her in the elevator... making friends with an old man in a wheelchair next to her... 

We're all confident that today will go our way. Her courage has carried us all this far. Now we wait...

Surgery and Beyond

Tomorrow is the big day. I am ready for the surgery to be behind me and the recovery journey to begin. The whole process of mentally preparing for a major surgery has been sort of surreal. Especially, the decisions of where to have my surgery and which surgeon to choose. Matt and I met with one surgeon and immediately felt we were in the right place. We have done some backtracking, after the fact, going over why this was our immediate feeling and really making sure we are 100% comfortable with our  decision.

First we felt it was best to be in Buffalo and not have to travel to receive care if at all possible. The hospital (Buffalo Mercy) is ranked in the top 5% of cardiac programs in the nation. The cardiac ICU and the surgical team have won many awards for their care over the past few years under the direction my surgeon. My surgeon, Dr. John Bell-Thomson, is a very good combination of lots of experience (43 years in surgical practice) along with keeping up with current medical techniques. In the video below the American Heart Association recognizes him for his work with minimally invasive robotic surgery (unfortunately my surgery is not eligible for minimally invasive techniques).

I realized I have shared a lot of medical information (Background) and some of the mental processing I've gone through (Thankful) but I sort of left out the surgery day details and preliminary recovery information.My surgery is scheduled for 7:30 AM tomorrow. It should take between 3 and 4 hours. The nurse practitioner I met with last week told Matt not to expect to hear anything before noon (and that is if my surgery starts on time).  I will be moved from the OR to directly to the cardiac ICU where they will wake me up. I will be in the ICU for the first day or two and then will be moved the the cardiac floor. I will be in the hospital for 4-7 days if everything goes as planned. After I am out of the hospital I am very limited in my upper body movements for the first 2-3 months while my sternum heals. This will probably be the toughest part because I won't be able to pick Aiden up during that time.

For local people I should be able to have non-family visitors once I am moved out of the ICU and into the cardiac floor.

Brin is going to be posting updates tomorrow and the first few days until I feel comfortable taking the posts back over. Thank you all for your support and encouragement so far! This is definitely the beginning of a long journey but I'm up for the challenge.


P.S. If you are wondering what you do the day before open heart surgery here's be run down:

• Do all the cleaning you've put off until this point (Really do a little cleaning and let Mom do a major clean- THANKS MOM).
• Make a cake. Seriously, a really yummy Pinterest recipe for a strawberry cake (that tastes exactly like strawberry shortcake) with cream cheese frosting. I added the stitched heart decorations for good measure. :)

• Go to dinner with your family and find cool shirts!

• Cuddle your very wiggly, not very into cuddling two year old and husband.

Thankful

I would be lying if I said I am accepting this surgery with complete grace and positive outlook. I have had more than my share of bad days: “it’s not fair” days, “my body hates me” days, “I’m scared out of my mind” days, “what if I die” days, “poor me days” and the list goes on.

After a lot of thinking, pondering and why me moments I’ve decided that I need a list of positive things that are still going on in my life. This way, when I have a mopey moment I can look at the list and remember that even though this is going on, it’s only temporary, things will get better and I still have a lot to be grateful for. I am thankful for:

•    Aiden- my beautiful two year old boy who is full of life and happiness. He is growing and exploring and eager to learn about the world more and more each day. A hug from him and an “I lub you too Mommy” is all I need to feel better after a bad day.

• My husband who works hard all the time to take care of Aiden and I but is on double duty through this whole process. He has been to all my doctors’ appointments, my shoulder to cry on and my voice of reason always reminding me that this is a small set back that is creating many more summers to plan and enjoy.
•   My sister who is my other shoulder to cry on. She also answers all my ridiculous medical questions as they arise between doctors’ appointments or are too embarrassing to ask the doctor.
•    My family and Matt’s family who are taking time out of their already short summers to help take care of myself and Aiden while I recover from this ridiculousness.
• The fact that there is a straightforward fix to my problem. My medical problem has a solution and many people are not that lucky.
•  HCOP funding getting renewed so I will have a job that I love to come back to in a couple months.
•   Jobs, for both Matt and myself, which have good health insurance and disability insurance so this already stressful time is not added to with excessive financial burden.
•  The fact that my BAVD has been monitored so closely for my entire life. Since I have no outward symptoms I could have been in very bad situation.
•  Getting to spend a few days in the Adirondacks with my family. ADK time is always relaxing for me.

* This is a picture I found online but is better than any I took last weekend!

•  All of the kind words I have received from all of you! They do help keep me going and help to keep my head in the right place.

Background

Here's a little background on my heart condition. My pediatrician detected a heart murmur when I was very little. Through testing,  the doctors discovered I was born with a congenital defect called Bicuspid Aortic Valve Disease (BAVD). Most people are born with a tricuspid (3 leaflet) aortic valve but I, along with only about 1% of the population, was born with a bicuspid (2 leaflet) valve.  As you can see in the picture below, this is the valve that separates your aorta from the rest of your heart. This is where oxygen rich blood is carried out of your heart and brought to the rest of your body.

* Picture from University of Rochester Medical Center website

The same genetic abnormality that caused my valve to form differently also affects the connective tissue in my aorta causing it to weaken and stretch out under the pressure of normal blood flow (this is called an aneurysm). If my aorta stretches and weakens too much it could spring a leak kind of like a hose. However, a leaking aorta only leaves me with a few hours to live.

For most people with BAVD the valve stiffens and starts to leak over time, eventually needing to be replaced. This usually happens to people in their 60s-70s. Sometimes, the weakened aortic root and ascending aorta have to be replaced with the valve. Most people have no symptoms at all until the valve is stiff and badly leaking. When that happens, people tend to feel shortness of breath doing normal everyday things. If the valve functions normally, there are no symptoms until the leaky hose phase. Obviously this is bad news bears because at that point most people would not make it to the hospital and into surgery in enough time to fix the problem.

 Luckily for me, my murmur was taken seriously when I was little. My issue was detected early on and I have been monitored my entire life. I have no outward symptoms so I would not know that anything is wrong if it wasn't for being monitored twice a year. It was at one of these appointments where it was discovered that my aorta had no patience with waiting until my 60s. It had stretched to the point where it is at risk of springing a leak.  So, into surgery I go on July 29^th.

The surgeon will open my chest by separating my sternum (full sternotomy),  and put me on a heart and lung machine to circulate my blood while they perform a Bentall Procedure on my heart. This includes replacing my aortic root, aortic valve, and ascending aorta. They will then wire my stern back together and close me up. My aorta will be replaced with Dacron tubing (a material kind of like Gortex) and my valve will be replaced with a bovine (cow) tissue valve. After about 6 months, the inner lining of my aorta will grow to completely coat the inner lining of the Dacron tubing. Below is a picture of what my heart looks like now with the aneurysm (stretched out part) and what it will look like after it is replaced with the graft.  

* Picture from heartvalvesurgery.com