I woke in my own bed which was a wonderful thing, but I was in a lot of pain and needed help getting up. It would just take practice to learn how to get in and out of my bed on my own without hurting my chest. Dad had to leave early to get back to work. He had used all his vacation days and didn't have any more time to spare. It still makes me sick to think that I caused him to use all his days for the year in May. He never thought twice about it though. Mom had already sacrificed so much too and needed to get back home. She was also out of her medicine. They decided that I wasn't strong enough to make another trip so soon after the flight though. A plan was put into place. Mom stayed through the week and went home that weekend to take care of things. Debbie, Melodie, and Stacey took turns staying with me until she returned on Monday. We would stop by the school Tuesday to say bye to my class, go to my appointment with the congenital heart doctor, then head back to Mom & Dad's house for a few weeks of recovery.
Cathy Christopher was right. It was hard. I couldn't do anything on my own but I was already exhausted from feeling like a burden. I wanted to be in my own home but I wanted to be with my family. I wanted to be with my friends who I missed dearly. I was sick of people griping at me and telling me that I couldn't do things. It was wonderful to see people those first few days after getting back and it was also hard. EVERY person that saw me exclaimed about how good I looked. I know that's wonderful but it's also very hard to handle too. After the surgery, since my body was actually getting oxygenated blood, my coloring truly went from a grayish tint to a healthy pinky-peach~~almost overnight! Each visitor meant so much to me because they took the time out of their lives to come and see me! That's huge to me especially since I couldn't really go anywhere and had been missing them all so much! Anyhow, as I said, Cathy was right, it was hard, but it was worth it! I'm so glad I had that week at my home sweet home before we headed west for recovery.
Sunday, May 30, 2010
Monday, May 24, 2010
The Friendly Skies :(
I had one last follow up appointment at Dr. Campbell's office with Dr. Babu on Monday morning. Everything was as expected so I would be able to fly. They explained that it was safe for me to fly but not advised so soon after surgery. To continue with recovery though, I needed to be at home and needed to fly to get home. That's basically why I was cleared to fly.
Stacey hooked Mom up with knowledge of airport wheelchair transport and got us bulkhead seats on the planes. As soon as our bags were checked I was tossed in a wheelchair and we were flying through the airport. All I could do was squeeze that stuffed dog as tightly as possible against my throbbing chest as we raced along. Periodically he would lean down and mutter, "you k?" to which I would respond with a positive nod. That guy was serious about his job and didn't waste any time! We didn't wait in line anywhere, not even at security ~ he just pushed us right on through! All three of us were very relieved to see our gate. We were able to take a little break before the plane began loading.
Even though Mom was pushing oxycontin and percocet down me like tic tacs the plane ride was still pretty rough. During take-off and landing it truly felt like the force was ripping my heart from my chest. By the time we loaded the second flight to go from Atlanta to Lexington, I was so exhausted that I couldn't grip the stuffed dog anymore. I just wanted to be done, to be home.
Melodie picked us up from the airport in Lexington. It was so good to see her! Jackson was at the house waiting for us. He was so calm and careful with me. When I went to bed, I was laying on my side with my hands clasped together out from my chest. Jackson gently crawled up on the bed and held my hands between his two paws and went to sleep. I think my pup missed me. :)
Stacey hooked Mom up with knowledge of airport wheelchair transport and got us bulkhead seats on the planes. As soon as our bags were checked I was tossed in a wheelchair and we were flying through the airport. All I could do was squeeze that stuffed dog as tightly as possible against my throbbing chest as we raced along. Periodically he would lean down and mutter, "you k?" to which I would respond with a positive nod. That guy was serious about his job and didn't waste any time! We didn't wait in line anywhere, not even at security ~ he just pushed us right on through! All three of us were very relieved to see our gate. We were able to take a little break before the plane began loading.
Even though Mom was pushing oxycontin and percocet down me like tic tacs the plane ride was still pretty rough. During take-off and landing it truly felt like the force was ripping my heart from my chest. By the time we loaded the second flight to go from Atlanta to Lexington, I was so exhausted that I couldn't grip the stuffed dog anymore. I just wanted to be done, to be home.
Melodie picked us up from the airport in Lexington. It was so good to see her! Jackson was at the house waiting for us. He was so calm and careful with me. When I went to bed, I was laying on my side with my hands clasped together out from my chest. Jackson gently crawled up on the bed and held my hands between his two paws and went to sleep. I think my pup missed me. :)
Sunday, May 23, 2010
Dr. Kaye
Dr. Kaye was the adult congenital heart specialist that was pulled on board for me. I know I've said it so many times that it's starting to seem untrue, but he was wonderful! It just proves that God did masterfully put everything into place because when and where would it ever happen that one person could ever have so many top doctors that truly care!?!?
He visited me the whole time I was in the hospital. He explained things to us and took time to talk with us each time he stopped by. I was particularly impressed with his passion for finding me an adult congenital specialist at home. He said it was a very small field of doctors but that he was determined to find one for me that he approved. If not I'd just have to be coming back to Denver to see him. :) As promised though, he did find a doctor for me, and had an appointment for me on June 2nd which was remarkably fast in the medical world! What a doctor!
He visited me the whole time I was in the hospital. He explained things to us and took time to talk with us each time he stopped by. I was particularly impressed with his passion for finding me an adult congenital specialist at home. He said it was a very small field of doctors but that he was determined to find one for me that he approved. If not I'd just have to be coming back to Denver to see him. :) As promised though, he did find a doctor for me, and had an appointment for me on June 2nd which was remarkably fast in the medical world! What a doctor!
Saturday, May 22, 2010
The Pep Talk
So very early on Friday morning one of my many doctors had come into the room and told me I was going home! I was excited and scared all at the same time. A few hours later I called Mom and Dad and told them so they would know to come on over to the hospital that morning. The next doctor that came in didn't say anything about it so I asked and he said, "Oh, we all looked at your numbers again this morning and had decided you're not ready to go home yet." It turns out that my oxygen levels weren't steady enough and some other things they'd been checking like potassium and such.
As you can expect, I was a bit crushed. Probably more because I was extra sensitive than because I wasn't getting out of the hospital. I started thinking about all things the different doctors had said in the past days and overthinking it all. I felt like it meant that the surgery didn't work and my lungs were still going to be just as much of a problem. I was afraid it was all for nothing. By Saturday morning I was in a tailspin. I needed someone to prove to me that my chest had been ripped open for a good reason and things were going to get better! Almost right on cue, Cathy Christopher walked into the room! She was so calming and comforting. She knew so much about my case. She explained how important the surgery was and how remarkable it was that I had lived 32 years with those rare defects. She explained that I would not have been strong enough to continue much longer with my heart in that condition. It had to be repaired. That was exactly what I needed. I needed someone who knew my situation to prove to me that I was going through all of this for a good reason. She did just that. She also talked to me about how hard it would be to go home. She went into great detail about the impact going home would have on me, my family, and my friends and how it was going to be something I would need to be prepared for, but would still be very difficult. I tried to just soak everything she said in and remember it.
Saturday afternoon they did release me from the hospital. The car ride back to the hotel was scary for some reason. I felt very out of control. I had trouble keeping my balance with each curve or turn. It was something else to learn to adjust to. (The doctor had told me that I would have to be a back seat passenger for eight weeks. It would take that long for my sternum to heal, so until then there would be no driving or riding up front.) It was good to be back at the hotel, our temporary home away from home. It was a rough night, but we all made it through. ;)
As you can expect, I was a bit crushed. Probably more because I was extra sensitive than because I wasn't getting out of the hospital. I started thinking about all things the different doctors had said in the past days and overthinking it all. I felt like it meant that the surgery didn't work and my lungs were still going to be just as much of a problem. I was afraid it was all for nothing. By Saturday morning I was in a tailspin. I needed someone to prove to me that my chest had been ripped open for a good reason and things were going to get better! Almost right on cue, Cathy Christopher walked into the room! She was so calming and comforting. She knew so much about my case. She explained how important the surgery was and how remarkable it was that I had lived 32 years with those rare defects. She explained that I would not have been strong enough to continue much longer with my heart in that condition. It had to be repaired. That was exactly what I needed. I needed someone who knew my situation to prove to me that I was going through all of this for a good reason. She did just that. She also talked to me about how hard it would be to go home. She went into great detail about the impact going home would have on me, my family, and my friends and how it was going to be something I would need to be prepared for, but would still be very difficult. I tried to just soak everything she said in and remember it.
Saturday afternoon they did release me from the hospital. The car ride back to the hotel was scary for some reason. I felt very out of control. I had trouble keeping my balance with each curve or turn. It was something else to learn to adjust to. (The doctor had told me that I would have to be a back seat passenger for eight weeks. It would take that long for my sternum to heal, so until then there would be no driving or riding up front.) It was good to be back at the hotel, our temporary home away from home. It was a rough night, but we all made it through. ;)
Friday, May 21, 2010
Learning How to Adjust
The days after I was moved to the regular room were spent managing the pain and learning how to adjust to the changes. Things like coughing, raising up, and getting out of bed were real challenges. The nurses had suggested Mom and Dad get me something soft to "hug against my chest" while doing these painful things. They found this stuffed pup in the gift shop! It is absolutely adorable and worked perfectly. It became my best friend when we were rushing through the airport! :)
I also learned that dilaudid was not my friend! They had put me on a pain pump when I was in ICU. I quickly made the connection that my out of control itching was directly connected to pushing the button! I simply stopped pushing and waiting for them to bring the doses of pain meds. It was pretty funny the first night in the new room the nurses came in to help me get out of bed. Before I could stop her, she pushed the button to be helpful. Within minutes I was scratching madly. By morning they had the dilaudid pain pump unhooked!
By Friday, I was walking the halls regularly and getting better at all the things I'd been working on with OT and PT. The swelling in my arms was nearly gone. The bruises were even healing quickly. In fact, we began to notice that scars and bruises I'd had for months were suddenly healing! Dr. Campbell said it was because my body was finally getting oxygenated blood! How crazy is that? My body had been doing without for so long and now everything is healing all at once! This is a picture of my arms from the end of the week. We were simply amazed at how much they had healed in such a short time. Before the heart surgery, my entire arm would have stayed bruised for months!
By Friday, I was walking the halls regularly and getting better at all the things I'd been working on with OT and PT. The swelling in my arms was nearly gone. The bruises were even healing quickly. In fact, we began to notice that scars and bruises I'd had for months were suddenly healing! Dr. Campbell said it was because my body was finally getting oxygenated blood! How crazy is that? My body had been doing without for so long and now everything is healing all at once! This is a picture of my arms from the end of the week. We were simply amazed at how much they had healed in such a short time. Before the heart surgery, my entire arm would have stayed bruised for months!
Wednesday, May 19, 2010
A New Room with a View
Late Wednesday I finally graduated to a regular room! Let it be known that I still had the huge IV in my neck and the drainage bags hooked to my chest. I was still losing blood, but it was apparently at a much more tolerable rate. :) We entered the room to see a wall length window with a view of Pike's Peak in the distance! Now if you must be in a hospital after heart surgery, I recommend Denver just for the view! Our pictures are terrible compared to the actual view. Honestly, I could have been looking at anything ~ the window just brightened my day!
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| This was actually the window at the end of the hallway I walked down. |
ICU Memories
When you think about all that the body goes through in a surgery like mine, it's pretty amazing to realize how relatively soon I was able to do certain things. I, of course, was terribly frustrated with myself at the time for the things I couldn't do on my own, but looking back, I'm impressed! As I mentioned on Tuesday, I was able to sit in a chair and stand. I was on a liquid diet which was completely fine with me because I didn't want anything at all except water and ice. That night, I had a pseudo sponge bath which was beyond humiliating to me.
Wednesday morning the physical therapist came and we walked a short distance down the hallway. It was like learning to walk all over again! That afternoon they removed the pacer wires to my heart. That wasn't a favorite experience for sure! They also removed the catheter that afternoon. I remember after going to the restroom by myself that first time I stood in front of the mirror to wash my hands and caught a glimpse of my chest & the incision in the mirror. I know it may sound odd, but to that point I had not looked at it at all. I had been so focused on just dealing with what I knew I could handle that I had not even thought about looking down. It was like looking at someone else in the mirror. I looked mangled. My entire left forearm was still swollen and a solid bruise. My right arm was a near match. My wrists were covered with holes likely from blood gases. This is what Mom and Dad were looking at each time they saw me - it was horrible!
Wednesday morning the physical therapist came and we walked a short distance down the hallway. It was like learning to walk all over again! That afternoon they removed the pacer wires to my heart. That wasn't a favorite experience for sure! They also removed the catheter that afternoon. I remember after going to the restroom by myself that first time I stood in front of the mirror to wash my hands and caught a glimpse of my chest & the incision in the mirror. I know it may sound odd, but to that point I had not looked at it at all. I had been so focused on just dealing with what I knew I could handle that I had not even thought about looking down. It was like looking at someone else in the mirror. I looked mangled. My entire left forearm was still swollen and a solid bruise. My right arm was a near match. My wrists were covered with holes likely from blood gases. This is what Mom and Dad were looking at each time they saw me - it was horrible!
Monday, May 17, 2010
Open Heart Surgery
We woke to a beautiful Denver day. I felt anxious and calm all at the same time. Waiting was impossible! I was supposed to be at the hospital at noon and the surgery was scheduled to begin at 2:00 p.m. Our phones were all ringing with prayers and well wishes from friends and family. Dr. Fenster even called me to let me know Dr. Campbell was a stellar surgeon and I couldn't be in better hands. He said he was thinking of me and would be checking in with Dr. Campbell after the surgery to hear the good news.
The time finally came to head to the hospital. We checked in and I signed all the paperwork. They called me back alone first. I changed into a gown and got into the bed. They brought my parents back. The nurse started working on my IV and was finally successful in my left hand. The anethesiologist talked with us for a while, followed by a few medical students and fellows who drew a big blue X on my chest. Finally Dr. Campbell came in at 1:45 to say hi and see if we had any last minute questions. I hugged Mom and Dad as they rolled me down the hall. In the OR I remember several people rushing around me and some were introducing themselves. They were adjusting the table and everything went black...
My next memory is waking up and seeing Mom and Dad in the doorway of the room. They looked worried. I could tell by the way people were rushing around the room that things weren't all rosy. I wanted Mom and Dad to talk to me but I wasn't ready to know about the surgery. Mom started to tell me about it and I shook my head and closed my eyes. I know now that must have been very frustrating to her, but I just wasn't ready to hear what had happened. I guess they made my parents leave after I was stable because I didn't see them again until morning. The next thing I remember is someone shouting, "Toni, Toni you have to breathe! Breathe Toni!" They had been trying to take me off the ventilator for several hours, but I wasn't breathing on my own. I guess they thought a firm pep talk would help! :) I remember trying, but had no power over my lungs at the time. I just couldn't breathe on my own yet. They were finally able to take me off sometime later Tuesday morning.
That's when Mom and Dad were back and I was a bit more lucid. The nurse came in and said I needed another transfusion. That terrified me! I looked at him, then to Mom and Dad in confusion. Dad said there were some complications during my surgery. Rather than lasting three hours it took almost seven hours. It just turned out to be a very complicated surgery. One major problem was that I lost a lot of blood and continued to lose it even after surgery. I had to have several transfusions totaling eight pints in the end. That news hit me pretty hard for some reason.
I quickly realized that I wasn't following the plan outlined by Cathy Christopher for the surgery timeline. I did get to sit up on Tuesday which seemed pretty amazing. Looking back, I think my body was in a survival mode physically and mentally. I was very focused on what I needed to focus on for that moment to get by.
The time finally came to head to the hospital. We checked in and I signed all the paperwork. They called me back alone first. I changed into a gown and got into the bed. They brought my parents back. The nurse started working on my IV and was finally successful in my left hand. The anethesiologist talked with us for a while, followed by a few medical students and fellows who drew a big blue X on my chest. Finally Dr. Campbell came in at 1:45 to say hi and see if we had any last minute questions. I hugged Mom and Dad as they rolled me down the hall. In the OR I remember several people rushing around me and some were introducing themselves. They were adjusting the table and everything went black...
My next memory is waking up and seeing Mom and Dad in the doorway of the room. They looked worried. I could tell by the way people were rushing around the room that things weren't all rosy. I wanted Mom and Dad to talk to me but I wasn't ready to know about the surgery. Mom started to tell me about it and I shook my head and closed my eyes. I know now that must have been very frustrating to her, but I just wasn't ready to hear what had happened. I guess they made my parents leave after I was stable because I didn't see them again until morning. The next thing I remember is someone shouting, "Toni, Toni you have to breathe! Breathe Toni!" They had been trying to take me off the ventilator for several hours, but I wasn't breathing on my own. I guess they thought a firm pep talk would help! :) I remember trying, but had no power over my lungs at the time. I just couldn't breathe on my own yet. They were finally able to take me off sometime later Tuesday morning.
That's when Mom and Dad were back and I was a bit more lucid. The nurse came in and said I needed another transfusion. That terrified me! I looked at him, then to Mom and Dad in confusion. Dad said there were some complications during my surgery. Rather than lasting three hours it took almost seven hours. It just turned out to be a very complicated surgery. One major problem was that I lost a lot of blood and continued to lose it even after surgery. I had to have several transfusions totaling eight pints in the end. That news hit me pretty hard for some reason.
I quickly realized that I wasn't following the plan outlined by Cathy Christopher for the surgery timeline. I did get to sit up on Tuesday which seemed pretty amazing. Looking back, I think my body was in a survival mode physically and mentally. I was very focused on what I needed to focus on for that moment to get by.
Friday, May 14, 2010
The Plan
Friday morning I was a little stiff from the heart cath, but it was nothing like I had expected. That was a good thing! I was supposed to have an appointment with Dr. Olson, but now I had to have a neck and chest CT instead.
That afternoon I received a phone call from Dr. David Campbell, a cardiothoracic surgeon. He said, "Hey Toni, care if I crack your chest open Monday around 2?" I mean seriously!! What a phone call?? I told him that would work for me and he let me know that he was really looking forward to meeting me. He had been talking with Dr. Carroll, Dr. Fenster, and even Dr. Olson and was very intrigued by my case. He said Cathy, my case manager, would call later with instructions and details about the surgery.
As expected, my phone rang again and it was the very kind voice of a lady named Cathy Christopher. She explained in detail what to expect from my open heart surgery. She told me what I had to do to prepare including shower with special soap prior to arriving to the hospital. It was a lot to take in. This was the play by play...
I guess I took to heart what Cathy said and it scared me. I realized I wouldn't get to finish the school year with my students. I wouldn't get to go back to work at all. Someone else would have to do the job I am supposed to do. I probably wouldn't get to plant a garden this year. I wouldn't be able to mow my yard for a while. Dad was going to miss another week of work because of me. Mom and Dad were both going to be in Denver longer which they were
not enjoying & it was so expensive for them. These thoughts were flooding in so fast that I was losing control. I couldn't handle that right now. There was nothing I could do about any of it. I just couldn't think about it anymore. I had to focus on the good. I had to focus on the possibility that in six months I could be able to run at the park with Jackson. I had to focus on the possibility that this was the big life changing answer I had been waiting for all these years. I had to focus on the fact that I know this is part of God's good plan for me and no matter how scared I am He has is all under control.
That afternoon I received a phone call from Dr. David Campbell, a cardiothoracic surgeon. He said, "Hey Toni, care if I crack your chest open Monday around 2?" I mean seriously!! What a phone call?? I told him that would work for me and he let me know that he was really looking forward to meeting me. He had been talking with Dr. Carroll, Dr. Fenster, and even Dr. Olson and was very intrigued by my case. He said Cathy, my case manager, would call later with instructions and details about the surgery.
As expected, my phone rang again and it was the very kind voice of a lady named Cathy Christopher. She explained in detail what to expect from my open heart surgery. She told me what I had to do to prepare including shower with special soap prior to arriving to the hospital. It was a lot to take in. This was the play by play...
- Pre-op ~ they would wheel me to the OR & put me to sleep
- surgery should last 3 hours
- move to ICU
- wake with big IV in my neck
- remove the neck IV & ventilator when I wake up
- sit up Tuesday morning & move to regular floor ~ walking
- released from hospital by Wednesday or Thursday
I guess I took to heart what Cathy said and it scared me. I realized I wouldn't get to finish the school year with my students. I wouldn't get to go back to work at all. Someone else would have to do the job I am supposed to do. I probably wouldn't get to plant a garden this year. I wouldn't be able to mow my yard for a while. Dad was going to miss another week of work because of me. Mom and Dad were both going to be in Denver longer which they were
not enjoying & it was so expensive for them. These thoughts were flooding in so fast that I was losing control. I couldn't handle that right now. There was nothing I could do about any of it. I just couldn't think about it anymore. I had to focus on the good. I had to focus on the possibility that in six months I could be able to run at the park with Jackson. I had to focus on the possibility that this was the big life changing answer I had been waiting for all these years. I had to focus on the fact that I know this is part of God's good plan for me and no matter how scared I am He has is all under control.
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| Perfect timing! Melodie sent some pics of Jackson. :) |
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| It was just what I needed! |
Thursday, May 13, 2010
"Oh My Gosh That Hole is Huge!"
Even though I was desensitized and ready, I was still nervous (whether I wanted anyone to know it or not)! How could I not be? I was about to undergo a procedure (that they were calling a surgery) on my heart which wasn't even a medical concern in my life one month ago! Yeah, I was nervous. I didn't like the idea of a big tube being stuck in through the artery in my groin and threaded up through my body to my heart. I didn't like the idea of being strong on the outside while I was falling apart on the inside and completely freaking out! I knew God was in control and still totally believed it was all for good. I was just scared about what was happening in the right now. Once again though, God did give me the strength to pull it together.
We went to the University of Colorado Hospital in Denver and checked in on the third floor at six o'clock in the morning. It didn't take long for them to call me back to prep me for everything. I dressed in their lovely hospital gown and waited for the Fellow to come and talk with us. He discussed the timeline and procedures with me and my parents and wheeled me away.
In the cath lab, there were four people with me. Mike, the nurse that stayed near my head most of the time and answered any questions I had along with his other duties. Sarah, another nurse who stayed at the other end of the table and worked with monitors and other things. The Fellow, (sadly I don't recall his name) who worked side by side with Dr. Carroll and of course, Dr. Carroll. As Mike and Sarah prepped me for the procedure they were very talkative and friendly. They did their best to make me as comfortable as possible. Dr. Carroll came in and told Mike that he could not give me any sedative at all for the procedure. Mike grabbed my hand and whispered, "It's okay, you're tough, you won't even need it. I'll be right here the whole time." I didn't know whether to be comforted or concerned. My mind was just a whirlwind of thoughts and confusion. For some reason, I focused in on my O2 sats on the only monitor I could really see and just fixated on that and my heart rate. I was watching my stats go up and down as I listened to the doctors talk about things I didn't really understand.
Suddenly, Dr. Carroll got very quiet, asked for more of something and then shouted, "Oh my gosh! That hole is huge! Look at that hole!" I asked Mike if that was rare. His eyes were very big as he nodded yes. Minutes later, Dr. Carroll seemed frustrated as he was whispering something to the Fellow. I heard him say, "This problem is much more significant than we expected." I calmly called his name from the table, "Dr. Carroll, what do you mean, more significant?" He took a deep breath, almost as if he'd forgotten I was awake, he walked closer to my head and said, "I can't repair the hole or the other defect through the cath, Toni. You're going to have to have open heart surgery." "When?" I asked. "Immediately, you can't get back on a plane. These problems are too serious. I know the best surgeon and I'll call him as soon as I get out of here."
I don't remember a lot more about what happened after that conversation. Mom and Dad said he came out and talked with them very openly about his surprise and how uncommon the defects were. He said he would have a surgeon named Dr. David Campbell call me personally to talk to me and schedule the surgery. He was sure he would take the case because it was so intriguing.
We spent the rest of the afternoon at the hotel resting after the procedure. Everything that I had felt before the cath was gone. It's so hard to describe how I was feeling that afternoon. It's almost like I was in shock ~ as if I wasn't feeling anything but "okayness".
We went to the University of Colorado Hospital in Denver and checked in on the third floor at six o'clock in the morning. It didn't take long for them to call me back to prep me for everything. I dressed in their lovely hospital gown and waited for the Fellow to come and talk with us. He discussed the timeline and procedures with me and my parents and wheeled me away.
In the cath lab, there were four people with me. Mike, the nurse that stayed near my head most of the time and answered any questions I had along with his other duties. Sarah, another nurse who stayed at the other end of the table and worked with monitors and other things. The Fellow, (sadly I don't recall his name) who worked side by side with Dr. Carroll and of course, Dr. Carroll. As Mike and Sarah prepped me for the procedure they were very talkative and friendly. They did their best to make me as comfortable as possible. Dr. Carroll came in and told Mike that he could not give me any sedative at all for the procedure. Mike grabbed my hand and whispered, "It's okay, you're tough, you won't even need it. I'll be right here the whole time." I didn't know whether to be comforted or concerned. My mind was just a whirlwind of thoughts and confusion. For some reason, I focused in on my O2 sats on the only monitor I could really see and just fixated on that and my heart rate. I was watching my stats go up and down as I listened to the doctors talk about things I didn't really understand.
Suddenly, Dr. Carroll got very quiet, asked for more of something and then shouted, "Oh my gosh! That hole is huge! Look at that hole!" I asked Mike if that was rare. His eyes were very big as he nodded yes. Minutes later, Dr. Carroll seemed frustrated as he was whispering something to the Fellow. I heard him say, "This problem is much more significant than we expected." I calmly called his name from the table, "Dr. Carroll, what do you mean, more significant?" He took a deep breath, almost as if he'd forgotten I was awake, he walked closer to my head and said, "I can't repair the hole or the other defect through the cath, Toni. You're going to have to have open heart surgery." "When?" I asked. "Immediately, you can't get back on a plane. These problems are too serious. I know the best surgeon and I'll call him as soon as I get out of here."
I don't remember a lot more about what happened after that conversation. Mom and Dad said he came out and talked with them very openly about his surprise and how uncommon the defects were. He said he would have a surgeon named Dr. David Campbell call me personally to talk to me and schedule the surgery. He was sure he would take the case because it was so intriguing.
We spent the rest of the afternoon at the hotel resting after the procedure. Everything that I had felt before the cath was gone. It's so hard to describe how I was feeling that afternoon. It's almost like I was in shock ~ as if I wasn't feeling anything but "okayness".
Wednesday, May 12, 2010
Desensitized and Ready
Just as Dr. Katial had explained, the second day of desensitization was much easier than the first. My reactions, if any were much milder. Most of the day was quite boring. I worked on report cards on the laptop from my hospital bed and got plenty of doctor ordered rest. I felt so bad for Mom and Dad. I'm sure it was a miserable day for both of them. I tried to get them to go sight seeing or at least go out for a nice lunch, but they wouldn't hear of it.
Dr. Fenster came in for my appointment about mid-morning. He spent time further explaining the information they had about my heart and why he thought the cath was so important. He stressed that fact that at this point they all believed Dr. Carroll would be able to close the hole with a device and the other defect was so minor that it could be left alone. The defects had been so hard to detect in all the scans and tests that they were really believing that they were going to be rather simple for Dr. Carroll to repair. As soon as I was desensitized I would be ready to go!
Dr. Fenster came in for my appointment about mid-morning. He spent time further explaining the information they had about my heart and why he thought the cath was so important. He stressed that fact that at this point they all believed Dr. Carroll would be able to close the hole with a device and the other defect was so minor that it could be left alone. The defects had been so hard to detect in all the scans and tests that they were really believing that they were going to be rather simple for Dr. Carroll to repair. As soon as I was desensitized I would be ready to go!
Tuesday, May 11, 2010
Gotta Get Desensitized
I woke up pretty nervous. A lot was on the line today and I wasn't feeling great. I wasn't sure what kind of an impact that would have on the procedures they had scheduled for me. I was also excited about Dad meeting everyone at National Jewish. He would finally see how wonderful this place is in person.
Upon arrival, instead of starting with my appointment with Dr. Olson which was on the schedule, they sent me straight to the MIDC (which is their version of ICU) to prep me for the aspirin desensitization. They said all the doctors on my schedule would come to meet with me there instead. I started with a spirometry which showed my lung function was below 40%. Not the lowest I've ever been, but not high enough for Dr. Katial to be comfortable to go forward with desensitization. Dr. Olson came over and they both examined me and ordered a chest x-ray & immediate meds/breathing treatments to improve my lung function. The x-ray showed pneumonia. I heard the two doctors discussing my treatment outside my room. Dr. Olson convinced Dr. Katial to go forward with the procedure. She was sure that I was strong enough to handle it even with the compromised lung function. We just couldn't postpone the heart cath again and she knew the desensitization would take the full two days.
Dr. Katial came in to talk with me and complete the consent form. He told me how uncomfortable he was about moving forward with the procedure and asked me not to sign the consent. I understood what was on the line in every way. I completely trusted that the procedure was meant to happen and that any complications could be handled by Dr. Katial and his team at National Jewish.
They did move forward with the procedure. The first day was pretty rocky. I never had to be intubated, but I did react to the increased doses of aspirin. Dr. Katial was like a nervous new parent. He was in and out of the MIDC checking on me and his team constantly. Dr. Olson also stopped in a few times. She started me on strong antibiotics for the pneumonia and assured us that she would get me well enough for the heart docs to move forward with everything on Thursday.
Needless to say, even though I was in one room all day, I was completely exhausted by the end of it. We left around four o'clock that afternoon with orders to return at eight the next morning to finish the procedure.
Upon arrival, instead of starting with my appointment with Dr. Olson which was on the schedule, they sent me straight to the MIDC (which is their version of ICU) to prep me for the aspirin desensitization. They said all the doctors on my schedule would come to meet with me there instead. I started with a spirometry which showed my lung function was below 40%. Not the lowest I've ever been, but not high enough for Dr. Katial to be comfortable to go forward with desensitization. Dr. Olson came over and they both examined me and ordered a chest x-ray & immediate meds/breathing treatments to improve my lung function. The x-ray showed pneumonia. I heard the two doctors discussing my treatment outside my room. Dr. Olson convinced Dr. Katial to go forward with the procedure. She was sure that I was strong enough to handle it even with the compromised lung function. We just couldn't postpone the heart cath again and she knew the desensitization would take the full two days.
Dr. Katial came in to talk with me and complete the consent form. He told me how uncomfortable he was about moving forward with the procedure and asked me not to sign the consent. I understood what was on the line in every way. I completely trusted that the procedure was meant to happen and that any complications could be handled by Dr. Katial and his team at National Jewish.
They did move forward with the procedure. The first day was pretty rocky. I never had to be intubated, but I did react to the increased doses of aspirin. Dr. Katial was like a nervous new parent. He was in and out of the MIDC checking on me and his team constantly. Dr. Olson also stopped in a few times. She started me on strong antibiotics for the pneumonia and assured us that she would get me well enough for the heart docs to move forward with everything on Thursday.
Needless to say, even though I was in one room all day, I was completely exhausted by the end of it. We left around four o'clock that afternoon with orders to return at eight the next morning to finish the procedure.
Monday, May 10, 2010
Rollin' with the changes
The whole heart situation was still a little fuzzy at this point. No one really knew how serious it was, but it seemed that they had a feeling it was a bigger deal than they were letting on. Dad took off work and joined us on this trip. The original plan was for us to fly to Denver on Sunday so I would be ready for the heart cath on Monday morning. I would have appointments at National Jewish on Tuesday and Wednesday and fly back home on Thursday. The plan was simple.
Sunday evening I got a call that the plan had changed. They decided I needed to go through aspirin desensitization before the heart cath could take place. That way, if they needed to implant the device to close the hole in my heart they would be able to do it and put me on aspirin afterwards. This meant we would be rolling with some changes. Monday was now wide open and the cath was scheduled for Thursday.
We planned a trip to the Denver Science Museum and did some other random things that Monday. I talked with the airline and changed our flight to Saturday morning. I could tell this trip was going to be different from our last one...
Sunday evening I got a call that the plan had changed. They decided I needed to go through aspirin desensitization before the heart cath could take place. That way, if they needed to implant the device to close the hole in my heart they would be able to do it and put me on aspirin afterwards. This meant we would be rolling with some changes. Monday was now wide open and the cath was scheduled for Thursday.
We planned a trip to the Denver Science Museum and did some other random things that Monday. I talked with the airline and changed our flight to Saturday morning. I could tell this trip was going to be different from our last one...
Thursday, May 6, 2010
To Travel Well and To Be Well
I walked into Cheddar's where I was expecting to meet a couple of friends for dinner before my weekend departure to Denver. I was surprised (and overtaken by emotion) to see a huge gathering of friends! They were all there to cheer me on, encourage me, and send me off to get better in the hands of the best doctors around.
You would think that was enough, but not for my dear friends. I had asked Stacey if I could borrow her luggage for the trip. Instead of borrowed luggage, everyone had chipped in and bought me brand new beautiful luggage of my very own! Apparently this secret plan was in the works before I even asked to borrow the luggage! :) Each suitcase was stuffed full of fun things for me to do when I returned from Denver well! I can't even explain how it feels to have so many people supporting me with such belief and hope!
You would think that was enough, but not for my dear friends. I had asked Stacey if I could borrow her luggage for the trip. Instead of borrowed luggage, everyone had chipped in and bought me brand new beautiful luggage of my very own! Apparently this secret plan was in the works before I even asked to borrow the luggage! :) Each suitcase was stuffed full of fun things for me to do when I returned from Denver well! I can't even explain how it feels to have so many people supporting me with such belief and hope!
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