it feels good to feel more like myself again

the speed of my recovery continues to amaze me. i can do so much more at two and a half weeks post-op then i ever thought possible. being able to shower, get dressed (in real clothes), do my own hair and makeup makes me look and feel more like myself. i feel like my life is resuming... slowly but surely. i still need help doing many household things (cooking, cleaning, laundry, shopping etc) but am enjoying letting others do it for me. for the next three weeks, i'll be doing my post-op doctor visits, then it's cardiac rehab time. i'm officially off all meds, even for pain. what little pain i have still is in my lower ribs. weird... i think it must be from the chest tubes. my incision is still tight but almost completely healed over, and i can feel the stitches underneath stretch and pull on occasion. every once and a while i'll try to do something and will be reminded quickly by my sternum that it is not yet healed. i still get some minor discomfort from that, and i still can't put my arms up on a table, but all in all i'm almost pain free.

it's new years eve and we're planning a really relaxed night at home. a fun dinner, some fun snacks and great friends. we're going to play games, drink (non-alchoholic for those with healing hearts) and hopefully laugh a lot. i'm looking forward to it.

have a safe and happy new year!
shannon

Things I can now do myself

1. shower
2. blowdry my hair
3. kick back the recliner
4. make cereal
5. get dressed
6. open the car door
7. walk up the stairs

i'm also now officially day 2 without pain meds and my stomach is returning to normal.

small victories!

week three

it's been a whole week now since we've been home, and there have been several small victories:

1. i'm sleeping in my own bed again... i've figured out a way to prop myself up in a way that makes me comfortable.
2. my meds are on a regular schedule and it's keeping me relatively pain free.
3. showers. not completely on my own yet, but always make me feel better.
4. getting out. so far i've been to dinner, breakfast, the movies, and watching friends bowl.

there are still a few issues we're continuing to deal with:

1. random bouts of nausea and vomiting. (extremely painful in my healing sternum).
2. headaches. which is wierd considering i'm taking tylenol every 4-6 hours.
3. dependence. it sucks, but i need to come to terms with the fact that it may be a while before i can take care of myself and my house on my own. i'm trying to relax and enjoy letting others do it for me, but the loss of independence has been difficult to get used to.

overall, i'm getting stonger everyday. i'm looking forward to starting cardiac rehab in just a few more weeks. the visiting nurse thinks she'll only need to stop in for one more visit. it's been great being home with my hubby, mom, and dog. i'm able to do more at this point of recovery than i thought i'd be able to, and i'm becoming more familiar with my limitations.

we had a great christmas. jeff LOVES his new guitar ( i AM the best wife ever :), mom got us some cool new digi cam toys, and i got the diana camera i've wanted for a while. we went to the movies, and enjoyed mom made dinner (pot roast, potatoes, carrots and salad). we watched superbad, and ate apple pie ala mode.

Week Two

So it's been a whole week since Shannon was put in a regular hospital room. There's been some ups and downs but overall she has made some great progress. She decided to try and go out to dinner this evening after feeling great all day. The dinner was good and getting out was great but sitting up in a table chair eventually took its toll on her. She is now sitting comfortably in her lazy boy. Sleep well tonight. Sleep well. -Jeff

Feeling Normal

Today was a bit of breakthrough for Shannon. She woke me up by calling from her cell phone around 5 this morning. It was pain med time. She walked upstairs and we set up some pillows in the bed so she could sit up like a lazy boy. It was the best sleep she has gotten so far. We woke up around 10 ate breakfast and I helped her take a shower. We got her dressed and did her hair. She's feeling like a whole person again. I caught her folding blankets. No no no! -Jeff

Working Out a System

"I've got to stop forgetting that my heart is held together with stitches." Poor Shannon. She feels good so she wants to get up and move around. But then she ends up paying for it with pain in her chest and palpitations. All she wants to do is have mobility. Today she decided to take it easy all day. It payed off. She feels pretty good.

We have to work out a system where she can go up stairs, rest, take a shower, rest and then go back down stairs some time after. Doing all of that in a short period of time results in major discomfort. We are learning what her limitations are one day at a time. -Jeff

Visiting Nurse

Today a nurse is visiting to do an at home checkup. Unfortunately, she is from the local hospital and is not too familiar with Shannon's condition. The data entry process is very time consuming. She will be coming by once a week for the next couple of weeks. After a little struggle she was able to get out the stitches left from the chest tube holes. -Jeff

i'm baack

hi all! me again, sober (almost) this time. home and resting comfortably. hmmm... how does it feel almost a week post-op? wierd. i don't feel sick, so i keep trying to get up and do things. last night i climbed the stairs to put my jammies on and realized afterward that it was not a smart move. today i tried to get upstairs and shower.. again, not smart. all my tapes, tubes, and wires are officially out and THAT feels great! the visiting nurse is coming tomorrow to take out any remaining stitches. i love having my dog, and my husband so close again. (home IS where the dog is). i'm going to have to force myself to stay put over the next few weeks... i may feel great but my heart and chest are still very much healing.

thanks to all who have been traveling this journey with us. your thoughts, prayers, cards and flowers really did a lot to keep moods lifted in the hospital. -shannon

Bull in a China Shop

She is back to the weight she was before we went to the hospital so all of the fluid she retained has gone away. Her temperature is a little low but it could be the thermometer. Sleeping through the night is tough because she's used to being woken up every couple of hours in the hospital. She's camped out in the living room with her lazy boy, blankies, and various narcotics.

It's nice to make meals at home again. I don't know how much longer I stand eating at a place called Potbelly's. Although they did make a mean white bread and bologna sandwich. That's for you Rolly. I felt a little like a bull in a china shop at the hospital, so it's good to get back home where I can take care of shannon without feeling like I'm in the way. -Jeff

She's Home

So we are home as of 4:00pm this evening. It seemed like it took forever but we made it. Shannon is sitting comfortably in a lazy boy chair we borrowed from the Millers across the street. Thanks Millers! It's so good to see her out of the hospital bed and back in street clothes. She's already discovered the limitations of her sternum. Opening the front door... not a good idea.

We have to go back in two weeks for a follow up with Dr. Webb and a month to see Dr. Woo. We're all stocked up on drugs thanks to CVS. Maybe now she will sleep through the night. -Jeff

Come and Get Me

They are sending her home. Her mom and I are scrambling to check out our room and cancel the remaining days we have left on our reservation. -Jeff

Breathing Easier

14 inches of tube. That's right FOURTEEN were pulled out of my poor little wife's chest. It was one of the craziest things I have ever seen. Now she is breathing easier than ever. She told the nurse practitioner that the most painful thing about heart surgery is having the drainage tubes taken out. The nurse said that most patients say the same thing. Dr. Woo's nurse practitioner Leigh had a much better technique for pulling them out than the nurse from yesterday. She is the bomb! Shannon wanted to give her a trophy.

We have been moved to a private room tonight so she should rest better than ever. There is a good chance we will be going home tomorrow. -Jeff

Coming Home Soon

They have told her she should be going home either tomorrow or Wednesday. The other chest tubes and pacemaker wires are to come out today. She gets up, walks to the bathroom, and washes her face all on her own. They are trying to ween her off morphine and start her on percocet. The percocet is making her nauseous. We need to figure out a drug that doesn't make her nauseous that we can take home with us. -Jeff

Can't Keep Her Still

Now she's all over the map. We have taken two more walks up and down the hall and all is well. She was happy to eat her leftovers from Buddakan (her favorite restaurant). All in all it was a good day! -Jeff

You Can't Keep a Cotner Down!

Shannon took her first steps down the hall this evening. That was huge breakthrough physically and mentally.

They have her on a drug that is flushing out all of the water she retained over the last few days so she is having to get up to go to the "potty" every 30 minutes. The good news is she can go back and forth to the bathroom on her own. No need to use the commode any longer or wait for the nurse.

We had some more visitors today from Shannon's crayola days. It's nice to have so much love. -Jeff

Flying high

morphine is my friend. if i could marry it, i would. who knew that the most painful part of open heart surgery would be removing the chest tubes? although it's not all bad.. jeff was right about the drugs. i have a line in my IV and i can give myself a dose every 15 minutes. AND NO, I AM NOT SHARING!

Be Gone Tube

The CAT scan showed no interference to the tube so they came back to take it out. Moving her around must of freed it up so this time it came right out (no pain). They have removed just about all of the connections except the last chest tube, the EKG, and the drug line. She's flying high on a massive dose of morphine so she's making us all laugh again. We hope to see her walk down the hall before we leave tonight. My mom is getting ready to take a taxi to the airport for her trip back to St. Louis. Thanks for coming out mom! -Jeff

The Chest Tube Won't Come Out

The nurse's have been trying to take out one of the chest tubes for almost an hour now. As they pull, it is causing Shannon to feel excruciating pain. It seems to be getting stuck on something. They now have to take her for a CAT scan to see what is keeping it from coming out. -Jeff

Feeling Better

Shannon received some good drugs to stop the pain and nausea. She is able to eat now so she's feeling a lot better. The visit with our friends was good. We really appreciate them driving down here to see her. Her roommate checked out today so it looks like she is going to have the room to herself tonight. That should make for some good rest. -Jeff

Hi guys! it's shannon! my first official post surgery post... finally feeling well enough to do so. ;)
The visit from friends today has done a lot to lift my spirits, as did the talk of removing my chest tubes tomorrow. Overall, this surgery really wasn't that bad. The docs were surprised to see me up and talking before leaving the ICU! we were out of there in less than 3 days... which is what they were projecting. i guess that says a lot about the power of intention. they're promising some yummy veggie lasagna for dinner, and we're getting ready to start a movie. i'll try to sign on again soon.. my short (and when i'm lucky long) naps have been far to enjoyable to turn down. ta ta for now! shannon

Rough Morning

Shannon is having some pain this morning when she breathes in and out. The Doctor says its all normal. He thinks she may have still been feeling the after effects of the anesthesia all day yesterday. Today it has worn off. She is having trouble keeping food down.

The bandages over the incision were removed by the nurse. We are now seeing it for the first time. It looks to be about 3.5 inches in length.

We are both looking forward to a visit later today from our friends in Allentown. We are in the Silverstein building of the main hospital tenth floor room 1028. Visiting hours are 11:00am-8:00pm. Aunt Terry, Grandma, Dad, and Margaret said their goodbyes last night and are heading back to the D as soon as they can get going . -Jeff

You Are Still A Very Sick Girl

Shannon asked the nurse how soon can she get up and walk around. The nurse in as kind and diplomatic a way as she could manage explained to Shannon that you are still a very sick girl despite how good you feel. Shortly after the nurses helped Shannon sit up so she could go sit on the commode. Once she sat up she realized how weak she really was. Shannon looked the nurse in the eye and said thank you for talking me out of walking around. Patience Shannon. Patience. -Jeff

A New Heartbeat

I got a chance to hear Shannon's new heartbeat a few minutes ago. Its a much clearer lub-dub than it was before. There is a slight murmur but not nearly to the degree it was when I listened three days ago. Her family and I had cake with her to celebrate the birth of her new valve. -Jeff

I Can't Believe How Good I Feel

These were Shannon's words when I sat with her this morning. She says she's feeling very little pain other than when she takes deep breaths. They are giving her ice chips and a little bit of water as needed. She is also allowed to eat whenever she's ready but she's not feeling hungry yet. When you see her its hard to believe she had open heart surgery yesterday. She's really in good spirits. Thank goodness for the drugs. -Jeff

Its Big Girl Room Time

I left Shannon last night shortly after they took out her breathing tube. It was good to hear her voice. She was trying to use sign language but everyone was having trouble understanding her. I called the hospital this morning and they said she did great through the night. Her nurse Dennis told me that she would be going to a step down room within the hour. Soon after I received my first call from Shannon, "When are you coming? I miss you.". Unbelievable speedy recovery so far.

Welcome Back Shannon

She's out of surgery and in the ICU as of 3:00pm. I finally got to see her. Seeing all of the tubes took a little getting used to but all in all its amazing to see her communicating so soon after. She is throwing up rock locks and showing us her fist every time the nurses comment on good she is doing. She wants the breathing tube out but they want to give it a bit more time. I can't tell you good it feels to see her doing so well. -Jeff

Putting Her Back Together

Good news...We were just informed they are closing up her incision. We are at the 5hr mark and all is well so far. Everybody is on their cell phones calling relatives back in Detroit and St. Louis. Grandma was instructed by Aunt Terry that crying is not allowed. Sometimes you've got to be militant. -Jeff

Nurse's Update 2

The surgical nurse stopped by again around an hour ago and explained that Dr. Woo is working with about a 3" incision (which Shannon will be happy about). They had to remove some of the scar tissue that existed from the first surgery she had when she was two. Its almost 3 hours now. -Jeff

The board says the procedure started at 10:01am. Go Woo! Go!
Dr. Woo is Shannon's surgeon.

The surgical nurse stopped by while I was in the cafeteria grabbing a soda. She told Shannon's aunt that she was very comfortable before the procedure and that we should expect the surgery to take anywhere from 3-5.5hrs. I hate sitting and waiting. -Jeff

Today is the Day

Shannon checked in this morning at 7:15. Her confidence and positive attitude amazed me!

Her family and I are waiting in the Surgical Family Lounge. A nice woman named Ann is looking after us. They have a great information board here that updates you when the patient is in the OR, when the procedure is started and when they are out of the room. We are showing Shannon in the OR at 8:20. When will the procedure start? -Jeff

pre-admission testing

Testing consisted of blood work (LOTS of it.. just how much blood CAN they take before surgery?) and ekg and an x-ray. sounds simple, right? IT TOOK 5 HOURS!!!

we learned about all the different kinds of waiting: the "have a seat over there" waiting, the "stand right here" waiting, the "you're next, but it will still be an hour" waiting, and the "let me take you out of the this waiting room and take you to another waiting room" waiting. i never knew waiting rooms had waiting rooms... they do. and they're not any faster.

we finally got a surgery time! 7 am... stay tuned for further details.

(my husband decided that the no food or drink sign was a great place to hide his contraband)

What are they fixing now & why?

I'm getting a new pulmonary valve. Why? Because the one I have is tired and needs a tune-up. My pulmonary valve is not closing properly, and had been continuing to get worse as I get older. It is very common for adults with Tetralogy of Fallot to get a new pulmonary valve.

As this valve has gotten weaker, it has been allowing more blood to flow back through it. This is what causes my heart murmur. This backflow causes my heart to have to work harder to get blood thru my weak valve. The continued backflow has been causing my right ventricle to inflate, kind of like a balloon, from all the extra blood coming back thru.

Why operate now? Because if the pulmonary valve is replaced now, chances are good that my right ventricle will "shrink" back down to a normal size. If we wait any longer, and allow the ventricle to get larger, chances are it will not shrink, and will stay inflated regardless of surgical intervention.

I'll be getting a bovine (cow) heart valve. (no vegetarian jokes, please). It's really kind of amazing. They grow a new valve around a mechanical base with tissue from a cow's heart, and is expected to last 10-15 years.

The man with the plan

Okay, the MEN with the plan.

My cardiologist is Dr. Gary Webb. He specializes in Adults with Congenital Heart Defects, and heads a ACHD clinic at UPENN. Lucky me! For more info on Dr. Webb and his clinic check out the link on my link list.

My surgeon is Dr. Joseph Woo. He is the Director of the minimally invasive and robotic cardiac surgery program. For more info on Dr. Woo check out my link in the link list.

Where and when is the surgery?

We have scheduled surgery for Thursday, December 13th. It is being done at the Hospital of the University of Pennsylvania in Philadelphia. Want more hospital information? Check out the link on my link list.

What has already been repaired?

Most of you know, I had open-heart surgery at the age of 2 (1980) at Children's Hospital in Detroit. At that point, they did a "complete repair" which involved:

1. Closing the ventricular septal defect with a patch.
2. Removing some thickened muscle below the pulmonary valve.
3. Repairing or removing the pulmonary valve.
4. Enlarging the peripheral pulmonary arteries that go to both lungs.

What is Tetralogy of Fallot?

Primary four malformations

As classically described, tetralogy of Fallot involves four heart malformations which present together:

1. A ventricular septal defect (VSD): a hole between the two bottom chambers (ventricles) of the heart. The defect is centered around the 'outlet septum', the most superior aspect of the septum, and in the majority of cases is single and large. In some cases septal hypertrophy can narrow the margins of the defect.
2. Pulmonic stenosis: Right ventricular outflow tract obstruction, a narrowing at (valvular stenosis) or just below (infundibular stenosis) the pulmonary valve. The stenosis is mostly the result of hypertrophy of the septoparietal trabeculae, however the deviated outlet septum is believed to play a role. The stenosis is the major cause of the malformations, with the other associated malformations acting as compensatory mechanisms to the pulmonic stenosis. The degree of stenosis varies between individuals with TOF, and is the primary determinant of symptoms and severity. This malformation is infrequently described as sub-pulmonary stenosis or subpulmonary obstruction.
3. Overriding aorta: defined as when the aortic valve is not restricted to the left ventricle, thus having biventricular connections. The aortic root can be moved anteriorly or override the septal defect, but it is still to the right of the root of the pulmonary artery. The degree of override is quite variable, being between 5-95% of the valve being connected to the right ventricle.
4. Right ventricular hypertrophy: The right ventricle is more muscular than normal, causing a characteristic coeur-en-sabot (boot-shaped) appearance as seen by chest X-ray. Due to the misarrangement of the external ventricular septum, the right ventricular wall increase in size to deal with the increased obstruction to the right outflow tract. This feature is now generally agreed to be a secondary anomaly, as the level of hypertrophy generally increases with age.