My Vision

I went to Dr. Stump, an opthamalogist, yesterday. He wasn't able to see any blockages in my arteries, but was still concerned. He and Dr. Singh decided to put me on plavix for a while to be on the safe side. I will be going for an echo on Friday to determine if there is any scar tissue or other such item blocking blood flow around the surgical sight. I will also be doing a TEE (Transesophogealechocardiogram) where they do the echo with a scope down your esophogus - not pleasant, but it will give them a good look at everything. My vision is still doing very odd things, but in general I feel really well. Still getting very tired, very quickly, but I'm doing well. Thank you to everyone for your continued well wishes. Can't wait to see everyone!
Love,
Joyce

I Don't Know Where to Begin

Thank you, thank you, thank you. I am overwhelmed by all the love and prayers expressed in the blog entries. (It's taken me most of the evening to get caught up.) This has been such a traumatic week for all of us. My memory of the first three days comes and goes and I am so grateful to be through the hardest parts. The goodbyes right before the surgery were absolutely excruciating. From that point on, I think I had the easy part on Tuesday. I can't even imagine how hard it was for Tony and my family to sit and wait. After saying good bye to Ashley at our house Monday night and riding off toward Philly, I worked through all the tears, called all my siblings and told them I loved them and a calm came over me that I just can't explain. It could only have been God answering prayers. I remained calm and actually slept that night in the hotel until 3 am. I had to shower with a nasty soap (I think it was 9 parts rubbing alcolhol and 1 part soap.) and then we trekked across the street to the hospital. After two very difficult good byes, I was taken to the OR and the prep began. I was handling things okay, until more and more faces peered down at me hooking different monitors and IV's into me. I had been promised happy juice to calm my nerves and requested that they let it flow as soon as possible. That's all I remember. I can't place the moment I awoke in ICU, it's very fuzzy, but when I did, the tubes in my throat were the worst form of torture I could have imagined. I was most afraid of the ventilator going into the surgery, and it proved to be a very ugly beast. They won't remove the tubes until you are fully awake and breathing on your own. I fought very hard to wake up, but it was so hard. They only let two people in to see me at a time. I kept dozing off, no matter how hard I tried to stay awake. Each time I started to gag, the nurse had to push the tubes in farther. (Not exactly helping, but I'm sure there was a medical reason.) At one point I started requesting paper and pen to write notes. The nurse was preparing to give me more sedatives and they were discussing leaving the breathing tubes in for the rest of the night. My brother, Buddy, finally figured out that I wanted paper and pen and a very interesting correspondence began. My parents saved the paper for me and I read over the notes this morning. (It was very surreal, as I don't remember much of it.) I was actually cracking jokes! I told the nurse not to give me sedatives and asked for her to put caffeine in my IV instead. Tony and his Dad (God love them) they were trying so hard to keep me awake by gently rubbing my arms. (Talk about putting a sleepy person to sleep in a hurry!) I was getting so frustrated. I wrote them notes to pinch me. (They wouldn't oblige!) I remember Mark and Jessica coming to say good bye and I was so amazed that everyone had stayed so long (Like I had any idea what time it was, it just seemed like weeks had passed!) Tony kept telling me visiting hours were over and I couldn't believe he wasn't able to stay with me. The nurse was very sweet and let him stay until I could get the tubes out. Not sure how long the fight for coherence went on, but I vaguely remember her pulling the tubes out and smiling. I remember trying to talk and my voice was so weak and hoarse. I don't remember much else from ICU until the tubes were removed the next day. (What a gross experience that was - I'll spare you the details) The guy that was assigned to move me from ICU to a new room was in training. I tried to be encrouaging, but my morphine had run out and his technique needs some work. I didn't even look out the window at my Philly view until the last morning in the hospital. I was really sad that they wouldn't let Tony stay the night with me in that room, either. It was a long and miserable night. My blood pressure kept dropping really low and far more than the usual once an hour wakings from people with needles, thermometers, and blood pressure guages insued all night long. I kept asking each new face that appeared by my bed, "Is this normal?" They each assured me everything would be okay. I was so glad when the sun came up. I began having migraines from the moment I awoke in ICU and they continued my whole time in Philly. I only remember about 5 minutes of all the time Karen spent with me. Karen, I can't thank you enough for bringing my baby to me, and Cathy - I'm so sorry you were sick, but I can't wait to see you when you are better-thank you for being so willing to bring her, too. I remember someone removing my bandages while Karen was there and I recall saying the scar reminded me of the zoom, zoom road. Looking at it now, it is pretty straight - really ugly, but straight. I also learned that Karen is very good at fibbing. She said I looked really good (I had to be nasty!) Some nurses are sweet, others, not so much. The nursing assisntants didn't seem to take much pride in their work and wouldn't help me get washed off in the morning. I did the best I could, but I that's not saying much. It was thought that the morphine was causing the migraines, so they took me off morphine Thursday night and forgot to replace it with something. (Loooooooong night!) It didn't look hopeful that I'd be going home soon, I could barely move and I had bloated up with so much water, it hurt just to move my arms and legs, much less lift them off the bed.) I finally received a pain killer 10 AM the next morning and was a world better within an hour. Amy, your comment about WW cracked me up. The silver lining in all of this was supposed to be that I'd finally lose a few pounds and when I stepped on the scale and they said I had gained 30 pounds I about fell over. (Tony had a really good laugh about that one.) I've almost gotten all of the water weight back off, but I doubt I'll be dropping anything extra. :-) Hard to believe you can eat broth for a week and still be heavier at the end of it! I must have been feeling a whole lot better by Friday night, because all I could think about was steak and potatoes. I sat up all night staring out the window feeling my heartbeat. I could see the hotel my family was in from my window and I kept trying to figure out how I could get from my room to them. I was getting very weirded out by my heart beat. (Sounds ungrateful, and I don't mean to be at all.) When I try to just sit quietly I am unable to because my whole body shakes. It literally feels like I'm sitting on top of a subway station, like a train is plowing right through me. It just goes to show how weak my valve had become. It will be a while before I'm used to the volume this new one produces. Everyone that came to check my vitals had to hear how much I wanted to go home and they all said I had to see what the doctor's said in the morning. One of the nicest nurses, Sue, gave me something very strong to knock me out, I'm sure so she could get some peace. I slept in the chair all night and woke up at 5:30. I called my husband and told him to come and get me. "I can't, I'll be over at 11:00" I tried to explain that I couldn't stay another night. That the smell was disgusting. (hospital smell - never noticed it until Friday night and then couldn't stand it) I waited in the hall for the doctors to make their rounds and follwed the nurse practitioner around until she got off the phone. As soon as she did, I announced, "I want to go home" She said okay. When I called Tony back and told him to come and get me he thought I had dreamt it. He sent my mom over to see if I was losing it and by the time she came in I was pulling things out of my bag to get her to help me shower. It was a long morning and a long ride home, but I am so glad to be here! One complication that has occurred is my vision is doing very strange things and I'm starting to think my migraines at the hospital weren't really migraines at all. Many people develop micro embolysims after being on the heart/lung machine during open heart surgery and it is quite possible I have developed them as well. I have been in communication with my Doctor in Delaware (Dr. Singh) and will be seeing an opthamalogist tomorrow to determine if there are embolysims present and if I need to be placed on blood thinners to avoid a stroke. I will add another entry tomorrow night to let you know what I find out. As for me taking it easy - I really have no choice. Tony has been so protective and I am just going to enjoy all of the care and concern. It's wonderful to have Mom here, though I know she is missing Dad. I would like to end with a very sad message to my Aunt Maureen and all of her family. I am so sorry for the loss of Diane and I wish I could be with Dad for the funeral. (He and mom were pretty stern in their refusal to let me go.) I love you and will be praying for you as you go through the difficult days ahead.
Thank you so much to everyone for caring. We are humbled by the outpouring of love. I look forward to seeing everyone and showing off my really ugly scar :-) I love you all so much!!!
Joyce

Great News-Mom's Home today!

Mom came home today thank godness! She is up and walking fine today and is a little tired today but she is glad to be coming home today. She couldn't stand the smell of the hospital any longer. Thank you guys for all your comments. If it wasn't for you guys mom would still be in her hospital bed right now.
Ashley

Joyce is up and around!

Joyce had a relatively good night. They have taken her off the morphine and I think that has now eased her migraines that she has been having. She also was having some fluid buildup and that has also been considerably better this afternoon.
Just as I was coming down to use the available terminals to update this blog, they were having Joyce walk the hallways. Then they took her for a session with fellow heart patients to discuss what to do/not do when she goes home.
She hasn't eaten solid foods as yet and there has been no discussion as to when she might go home. I'm fairly sure it won't be for a couple more days at least. She looks good .. great color .. excellent heart beat .. and she is starting to feel like she is on the mend!
She still hasn't seen your comments but I'm sure she will enjoy reading them when she can. Thanks again for all your prayers.
God Bless! Art

Mom is doing better

This is Ashley and I came to see mom today. She has been sitting in the chair and they have had her up and walking twice today. She seems to be getting better and sends everyone her love.

We will send you updates later to let you know how everything is going.
Ashley

Joyce out of ICU

Joyce has been moved from ICU into a room with a beautiful view of the Philadelphia skyline! She is somewhat sore and tired but is in good spirits. It seemed to take forever from the time they said that they were moving her until they actually did .. 1pm to 4pm!
She said to say Hi to everyone and to thank you all for your prayers and support. She hasn't been able to read your posts yet as we have no portable PC with web access.
She is now in SILVERSTEIN Bldg, Room 1023B .. 10 floor. She has a room phone but it will probably be awhile before she is up and able to answer. 215-614-1714. Wait a day or two before calling directly.
Art

Off Ventilator

Good Morning! Good news .. Joyce was taken off the ventilator around 9pm last night. Tony was able to remain in the ICU until almost 10pm. Joyce was doing much better and was delighted to have that out of her throat! Tony and her talked for awhile. Tony returned to the hotel in much better spirits.
I forgot to mention yesterday, the thrill Jan (Joyce's Mom) got when she went to see Joyce for the first time in the ICU. She couldn't stop staring at the heart monitor. The heart rthym was perfect .. really looked beautiful!
We can't get to see Joyce until after 11am today. I'm sure she will be much improved from yesterday.
Art

Joyce is resting ...

Joyce is still in the ICU and will spend the night there. She still has a ventilator but is trying harder to breathe on her own. She seems less agitated and appears to be more comfortable. We have said our good nights and will see her again in the morning.
Art (Joyce's Dad)

Operation Complete .. Joyce did good

Dr. Pochettino came and reported that the operation is complete. Joyce did very well during the procedure. They replaced the valve after finding the problem that they thought was there. Howver, they felt that the aorta did not need replacement. So the operation was somewhat shorter than the five hours that was estimated .. about 3.5 hours.
He said Joyce was being moved to the intensive care unit and is currently on a ventilator until she is fully awake. That may be several hours and she will stay overnight in the IC unit.
Thank the Lord that everything was successful! Thank you all for your prayers. I'm sure Joyce will want to extend her thanks personnally later!
Art (Joyce's Dad)

Operation Complete .. Joyce did good

Joyce's Procedure has started

Hi Everyone,
Joyce got her day started about 3 a.m! She was up and ready to shower. We all were up and chatting by 4 a.m. Joyce was in good spirits, nervous but at the same time feeling calm. We all left the hotel and went on down to admissions by 6 a.m. She got checked in and some tearful hugs were exchanged.
She went into OR prep at 6:12am and then she got to spend a little time with Tony and her Mom, Jeanette. She was in good spirits and gave them the thumbs up as she went on to theoperating Room at 7:04.
They have just now actually started the procedure .. 8:35am. We are all in the surgical waiting room ..Tony, Joyce's Mom and Dad, Her brother Mark and Jessica, and Tony's dad Anthony. They have a couple of large electronic status boards in the waiting area on which they indicate the various stages of progression relative to the procedure. We will keep everyone informed as she progresses. Keep her in your prayers.
Art (Joyce's Dad)

Tomorrow is it!

Hi guys' it's Ashley. Tomorrow is the big day. It all feels as if this whole surgery is happening to someone else doesn't it? But while I'm home with my grandmother I will be sure to upgrade this blog everyday that my mom is in the hospital. So don't forget to write comments to us everyday(or as soon as possible) because we need to hear everyone's responses and comments. You guys' have been so kindhearted to us ever since the beginning. I'm sure I will be hearing a lot from all of you for the next few days. Oh, and did I forget to mention that on Sunday it is my mom's birthday that day. She will be turning 41. I know she doesn't look it but it's true. Hopefully she will be home by then.
Ashley

The Plan

I've been amazingly calm this weekend. (Aside from Friday night) I have no doubt it is thanks to the many prayers going up for me to be at peace with everything this weekend. Thank you to everyone for that. Tomorrow (Monday) I will take Ashley to school, get all the last minute things accomplished, and pack up the car. We will pick Ashley up from school at 3:30, go out to dinner, and say our goodbyes. Tony's mom will stay with Ashley while his dad and my parents and I head up to Philly. We will stay in a hotel Monday night. At this point I am scheduled for the OR at 6 AM Tuesday morning. (Think of me when your alarm goes off that morning.) I will find out for sure tomorrow afternoon. Dad has agreed to update the blog during the surgery, as that will be the easiest way to keep everyone informed. Thank you for your continued prayers. I'm anticipating tomorrow will be difficult, but I hope to hold on to this calmness. Love to everyone!
Joyce

It's Finally Real

Today was my last day of work. My mood all week has been so different from last week. (Really good mood, like nothing out of the ordinary is about to happen.) Today was busy, to say the least. I said my good byes to my students as each class came and gathered all their things from the AT room. They were bittersweet goodbyes, but no tears. (For those of you who have seen me year after year crying my eyes out on the bus platform saying goodbye to my kids on the last day of school, you can appreciate how odd it sounds for me to have no tears saying my goodbyes today.) I busily organized (or shoved things into nooks and crannies on bookshelves and in cupboards) and tended to last minute details. All day I've been saying to friends that it just seems like the surgery is happening to someone else. Even while Ashley and I were at the hospital yesterday for my preadmission paperwork and testing, it still seemed distant, like we were discussing someone else. Emotions got a little more overwhelming once all the kids left for the day, but no time to let that overwhelm me, I had more organizing to do and many things to load into my car before picking Ashley up from school. I met some very special friends at Ruby Tuesdays for drinks, and all still seemed amazingly calm inside of me. We laughed and chatted and I didn't think too much about anything out of the ordinary coming soon. Until the good byes . . . I could feel a sense of panic swelling up inside of me as each person hugged me and wished me well. It was the final goodbye in the parking lot that seemed to snap me to my senses. As Karen and I stood in the rain, I didn't want to say that final goodbye and get into my car. As soon as I did, I suddenly became very aware that this is all too real, and it's really happening to me. I cried the whole way home and for a good while after arriving. I'm okay now, but I have a hunch this weekend will be full of those reality moments. If saying goodbye to friends was so overwhelming, how will I walk away from Ashley Monday afternoon, and how will I walk away from family in the waiting room Tuesday morning. Those are the moments I've been dreading since January. I'll be so happy for Wednesday to get here!

To those of you at work, I can't bring myself to read the Kisses book yet, your notes are sure to touch me more deeply than I can handle at the moment, but the book is going to the hospital with me. I may have to save reading it for Wednesday :-)

Thank you, again, to everyone for all your love, inspirational words and prayers. You'll never know how much they help to carry me through the dark moments.
I love you all!
Joyce

Eight more days

There is eight more days left until the big surgery. I know all of the family is not ready for this day to come but it's got to be done. We do appreciate all the love and care you are giving us. We would really like you to keep getting in touch with us and have you write down your comments for next week. Please keep us in your prayers and I will let you know how my mom is when she is up at the hospital. Thank you.
Ashley

I've been approved!

Earlier this week I phoned Joanne at Dr. P's office and again asked if all the paperwork was submitted to the insurance company yet. (and again, she yelled at me for worrying.) Given the week I have had, I proceeded to snap back. This seems to be the only approach that breaks through her barriers and by the end of the conversation she was giving me the info I was needing. She had submitted all the paperwork along with 70 extra forms and documents (Univ. Hospital is out of network for my insurance and they need to prove medical necessity.) She hadn't heard anything back and thought that was a good sign. Thursday, I received a very nice message on my cell phone from her informing me that the insurance had approved my surgery and it's all a go. (I was relieved and elated at that news, but quickly panicked, as I realized we won't be postponing anything.) That's okay, since I don't think I can go through the weeks approaching surgery all over again. I will be going up for preadmission testing on Thursday, May 15th. I will get as many questions answered then concerning the surgery. (prep, hospital stay, visitation, etc . . .) Looks like it's really happening. I'll let everyone know what I find out on Thursday. Love to all!
Joyce

What a day...

Very few of you know this, but last Monday (April 28th) I had to have a repeat mammogram done. Tuesday, as I was driving to my dentist's office to have my teeth okayed for surgery, I got the dreaded call from Dr. Cooper telling me I needed the next available appointment for a biopsy. What an incredibly hollow feeling that produced. Dr. Barnett squeezed me in the next day and was wonderful at calming our fears. We wouldn't know the pathology until today.
Today arrived. What a day it has been. My position at work was RIFed due to budget cuts (I will have a regular classroom next year.) For any Banneker parents reading this, don't worry, the district has a plan for meeting the needs of gifted students in the elementary schools. It was a truely emotional day, as I have put my heart and soul into creating a gifted program to be proud of. I am very sad to give it up. But here is the good news - the pathology results were fine. (Thank you, God!) I cried many tears today, not just for my position, but more for feeling like too much is out of my control at the moment. (Any of you who know me well, know that I need to feel in control - okay, we'll say I'm a bit of a control freak.) With so many things feeling up in the air, it's quite overwhelming at the moment. Now, as I look back on the previous week, I can see that it's time to shake off the blues and focus on my blessings. I have a job, I don't have breast cancer, and I have a lot of people showing me so much care and support. My family and friends are my greatest blessings. Thank you to all of you for keeping me going. Tomorrow is another day and it's sure to be better!