It has been awhile since my last post so I thought it may be time to update my progress for those interested!
Last Wednesday Jason and I visited Rush to meet with my surgeon, Dr. P, for my post operation follow up. I had to have a chest xray and EKG, which both looked good. Also my blood pressure is off the charts good. I was so surprised because I was super nervous and that usually makes my bp sky high but this time it was awesome. That is one aspect we notice that changed right away. I never had "high" bp but some times I would be slightly over normal. Now it is perfect! After my tests Dr. P came in to report all looked good and that they are very happy with the results. He was glad to see me up and moving around every day and looking almost like nothing ever happened. I explained to him that my chest still hurts most of the day and my energy is still pathetic. Dr. P assured me that over time both will get better. I am still instructed to take Motrin for the pain. He said my energy will get better with more activity too. One thing I learned was that my sternum was reconnected with metal wires. There could be a chance airport metal detectors could go off! Guess I will find that out Dec 18 when I fly home for Christmas. Glad to know I may be a security threat each time I fly. We also got to discuss when I am able to start doing various activities:
*Running - Now! I am able to start doing cardio workouts that do not require a lot of movement of the chest muscles, so running and the stationary bike.
*Weights - 12 weeks from surgery so 8.5 more weeks.
*Driving - 6 to 8 weeks from surgery. So 3-5 more to go. Probably going to have to compromise at 3 more weeks since I kinda need to drive to and from work
* Work - soon.
This was the last appointment I needed to have with the surgical team. It was a great moment to know all is healing well!
One of my major goals I set before surgery was to go to O'Fallon for Thanksgiving with Jason's family. I was so nervous about the drive and being away from home, but all went great! It was so good to feel a bit normal and get out of the house for a bit. The drive down was painful towards the end but not unbearable. We had a fabulous time with his family. This Thanksgiving I had so much to be thankful for. I will always remember the people that were there for me through this entire ordeal. They will forever have a place in my heart. The Thanksgiving was complete by being able to see my brother before we headed home. It was so great to catch up with him and show him that I am doing well.
Today was probably the most exciting day as I went for my very first run with the new heart part! Dr. P said it was okay so I took the opportunity to get out and try things out. In terms of my heart, I was fine. As for my legs....PAIN!! Doing little activity for 3 weeks made my legs so tense! I could not believe it. But I was able to run and that feeling was so exhilarating. Plus I am officially able to say that I went from open heart surgery to running in less than 4 weeks! So proud of myself! Now I just have to work on getting back to where I was physically before surgery. Must keep reminding myself to be patient and take things one step at a time.
I keep getting emails and notes on FB asking how I am doing. Thanks for still thinking of me and sending tons of encouragement my way. I still really appreciate all the support.
Sunday, November 29, 2009
Sunday, November 15, 2009
Bandages Are Removed....Drum Roll Please!
The last two evenings have been eventful in my life. By eventful I mean a few minutes of excitement.
Last night as I was changing for bed a bit of the surgical tape came off and I got to see my incision for the first time. At first, I was like this looks pretty good! Then I saw a noticeable grove that just did not look right. I immediately panicked and believe I was coming unstitched. Crazy, right? In my defense, I was a bit delirious last night from a long day of visitors. Nonetheless I was convinced there was a problem. Both Jason and my Mom tried to calm me down but my mind was made up. Then I had a moment of genius (as genius as you can get in a state of exhaustion) I removed more bandages to see if the rest of it looked botched. Removing two more pieces of tape revealed that the incision was actually okay. Phew...such relief!!
Once I started the removal of the bandages the rest wanted to come off too. So this afternoon I removed the other dozen or so strips. I was so nervous seeing my full incision for the first time. For 26 years I lived with other one and knew it so well. It was part of me and I was pretty partial to the scar. So seeing this new part of me was a bit overwhelming. Jason was with me as I took off the last pieces and we were both amazed how great it looked. We looked at each other and questioned if I really had major surgery less than two weeks ago. I couldn't look at too long because I knew I would nit-pick. I do not think any incision ever looks perfect and my last one was nothing to be proud of, but I had gotten used to its imperfections. When the tape first came off the incision was a light pink color but after a few hours with air, it turned the dark red color I expected in the beginning. Ick. I covered it with gauze for the night because I learned from my chest tube that it takes many washes before the sticky residue of the tape comes off. I do not want pieces of fuss sticking to my incision and making it all gross. My Mom told me to take a picture of my old scar and I didn't. Now I wish I had because it would have been nice to see the difference. Once again, one should always listen to their Mom!
Below are two pictures of my incision. I figured I have shared practically everything up to this point, I might as well share this. I mean if Jason alerted to the world I had a cath in my bladder then this is no biggie :o)
First picture is 2 days after surgery. The bandages lasted up until to day. The second picture is what the incision looks like after a few hours unwrapped. The incision goes from about 2 inches below my collar bone down to about 5 inches above my belly button. The incision is not straight and this is because my first one was all over the placed. My surgeon this time cut all of that out to make it nicer but it looks like getting it perfectly straight was not possible.
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Last night as I was changing for bed a bit of the surgical tape came off and I got to see my incision for the first time. At first, I was like this looks pretty good! Then I saw a noticeable grove that just did not look right. I immediately panicked and believe I was coming unstitched. Crazy, right? In my defense, I was a bit delirious last night from a long day of visitors. Nonetheless I was convinced there was a problem. Both Jason and my Mom tried to calm me down but my mind was made up. Then I had a moment of genius (as genius as you can get in a state of exhaustion) I removed more bandages to see if the rest of it looked botched. Removing two more pieces of tape revealed that the incision was actually okay. Phew...such relief!!
Once I started the removal of the bandages the rest wanted to come off too. So this afternoon I removed the other dozen or so strips. I was so nervous seeing my full incision for the first time. For 26 years I lived with other one and knew it so well. It was part of me and I was pretty partial to the scar. So seeing this new part of me was a bit overwhelming. Jason was with me as I took off the last pieces and we were both amazed how great it looked. We looked at each other and questioned if I really had major surgery less than two weeks ago. I couldn't look at too long because I knew I would nit-pick. I do not think any incision ever looks perfect and my last one was nothing to be proud of, but I had gotten used to its imperfections. When the tape first came off the incision was a light pink color but after a few hours with air, it turned the dark red color I expected in the beginning. Ick. I covered it with gauze for the night because I learned from my chest tube that it takes many washes before the sticky residue of the tape comes off. I do not want pieces of fuss sticking to my incision and making it all gross. My Mom told me to take a picture of my old scar and I didn't. Now I wish I had because it would have been nice to see the difference. Once again, one should always listen to their Mom!
Below are two pictures of my incision. I figured I have shared practically everything up to this point, I might as well share this. I mean if Jason alerted to the world I had a cath in my bladder then this is no biggie :o)
First picture is 2 days after surgery. The bandages lasted up until to day. The second picture is what the incision looks like after a few hours unwrapped. The incision goes from about 2 inches below my collar bone down to about 5 inches above my belly button. The incision is not straight and this is because my first one was all over the placed. My surgeon this time cut all of that out to make it nicer but it looks like getting it perfectly straight was not possible.
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Wednesday, November 11, 2009
One Week Appointment
We made the hike to Rush today to meet with Dr. Hijazi for my one week appointment. I am pretty sure Jason can make that drive in his sleep these days! I feel like it is our second home. Today they did another echo and then I met with Dr. H to hear how I am doing.
The echo tech - John - was amazing! He was so quick and efficient and told us exactly what he was looking at. John did my echo last Thrusday while still in the hospital, so Jason and I were seeing my new valve for the second time, but this was the first for my Mom. John explained the the right ventricle needs to be 2/3 the size of the left and he said mine is almost there. That means that the dilation I had did not cause permanent enlargement and my heart is actually shrinking! He also confirmed there is no leakage in the valve meaning the valve open to let blood out and then shuts so nothing returns. There is also no fluid around my heart which can occur after surgery. Oh and no fluid in my lungs. Basically what he was telling us was my surgery was an A+ success! Despite being absolutely terrified to have this done, it was totally worth it.
After the echo, Dr. H came in with a slew of residents! He said they all wanted to meet me and all I could think is how lucky they are to learn from him. I am so glad he is at a teaching hospital and can pass down all of his knowledge. He basically said I am doing great and I do not look like I had open heart surgery a week ago. I swear I must hide things very well! I reviewed the echo, listened to my heart and lungs, and checked my incision. Most of the visit was just chatting. He said the bruising is normal and will take a few weeks to go away. He also said the aches and pains are still typical and expect it to be there until the breastbone is completely healed. Oh and he stressed I have to be patient on getting my energy back! I told you this was the hardest part! He did not give me another perscription for the pain meds. He said they just make your body go whack so to try upping the Motrin and see how that helps. I am all for getting off those so I will tolerate the pain a little more. Best part is I got written consent to get a massage!! He agreed that should help the back pain! I am so excited! Dr. Hijazi told me there are no more worries and to take the next 3.5 weeks to relax, recovery, and enjoy some down time! Next time I will see him is Jan 6!
I am not sure if I posted this before but there were two surgeons in the OR with me - Dr. Ilbawi and Dr. Polimenakos - and I was convinced Dr. Ilbawi was not there because I never say him pre or post operation. I didn't make too much fuss because I know he is extremely busy but I just found it odd. Dr. P is an amazing surgeon and I am so grateful but when you are told someone is operating on you and then you never see them, it kinda is weird. Anyway, Dr. Hijazi told me today that he was at a dinner on Friday and sat at the same table as Dr. Ilbawi and told him that I was upset he didn't come see me!! Eek! I guess Dr. Ilbawi felt so bad! I guess he is so used to working on little babies that could care less about who their surgeons are that he does not do rounds. Dr. Hijazi explained to him that adult patients like to meet their surgeons! Jason started laughing and told me on Tuesday I was asking about Dr. Ilbawi like every 5 mins. I feel so embarrassed now. The main reason I wanted to see Dr. Ilbawi was just to thank him. I know he does wonders for people on a day to day basis, but I felt like I owed him a thank you for taking time out to help me.I suppose I will just have to send him a card :o) I do hope one day I get to see him again and tell him personally how much I appreciate his care.
Today was a mix of emotions. I am so glad to be better. I have dealt with being broken for so long that it is still a bit surreal that I am fixed. My mom, Jason, and I were able to just have a deep sigh of relief today. It was a nice feeling!
In two weeks I visit with Dr. P for an EKG, chest xray, and chat about how I am doing. He will also look at my incision. By that time the bandage tape should be coming off. Seeing my incision of the first time will be interesting.
Chat with you all soon!
Lots of Love,
Maegan
The echo tech - John - was amazing! He was so quick and efficient and told us exactly what he was looking at. John did my echo last Thrusday while still in the hospital, so Jason and I were seeing my new valve for the second time, but this was the first for my Mom. John explained the the right ventricle needs to be 2/3 the size of the left and he said mine is almost there. That means that the dilation I had did not cause permanent enlargement and my heart is actually shrinking! He also confirmed there is no leakage in the valve meaning the valve open to let blood out and then shuts so nothing returns. There is also no fluid around my heart which can occur after surgery. Oh and no fluid in my lungs. Basically what he was telling us was my surgery was an A+ success! Despite being absolutely terrified to have this done, it was totally worth it.
After the echo, Dr. H came in with a slew of residents! He said they all wanted to meet me and all I could think is how lucky they are to learn from him. I am so glad he is at a teaching hospital and can pass down all of his knowledge. He basically said I am doing great and I do not look like I had open heart surgery a week ago. I swear I must hide things very well! I reviewed the echo, listened to my heart and lungs, and checked my incision. Most of the visit was just chatting. He said the bruising is normal and will take a few weeks to go away. He also said the aches and pains are still typical and expect it to be there until the breastbone is completely healed. Oh and he stressed I have to be patient on getting my energy back! I told you this was the hardest part! He did not give me another perscription for the pain meds. He said they just make your body go whack so to try upping the Motrin and see how that helps. I am all for getting off those so I will tolerate the pain a little more. Best part is I got written consent to get a massage!! He agreed that should help the back pain! I am so excited! Dr. Hijazi told me there are no more worries and to take the next 3.5 weeks to relax, recovery, and enjoy some down time! Next time I will see him is Jan 6!
I am not sure if I posted this before but there were two surgeons in the OR with me - Dr. Ilbawi and Dr. Polimenakos - and I was convinced Dr. Ilbawi was not there because I never say him pre or post operation. I didn't make too much fuss because I know he is extremely busy but I just found it odd. Dr. P is an amazing surgeon and I am so grateful but when you are told someone is operating on you and then you never see them, it kinda is weird. Anyway, Dr. Hijazi told me today that he was at a dinner on Friday and sat at the same table as Dr. Ilbawi and told him that I was upset he didn't come see me!! Eek! I guess Dr. Ilbawi felt so bad! I guess he is so used to working on little babies that could care less about who their surgeons are that he does not do rounds. Dr. Hijazi explained to him that adult patients like to meet their surgeons! Jason started laughing and told me on Tuesday I was asking about Dr. Ilbawi like every 5 mins. I feel so embarrassed now. The main reason I wanted to see Dr. Ilbawi was just to thank him. I know he does wonders for people on a day to day basis, but I felt like I owed him a thank you for taking time out to help me.I suppose I will just have to send him a card :o) I do hope one day I get to see him again and tell him personally how much I appreciate his care.
Today was a mix of emotions. I am so glad to be better. I have dealt with being broken for so long that it is still a bit surreal that I am fixed. My mom, Jason, and I were able to just have a deep sigh of relief today. It was a nice feeling!
In two weeks I visit with Dr. P for an EKG, chest xray, and chat about how I am doing. He will also look at my incision. By that time the bandage tape should be coming off. Seeing my incision of the first time will be interesting.
Chat with you all soon!
Lots of Love,
Maegan
Tuesday, November 10, 2009
One Week and Counting!
Today marks the one week mark of my surgery! I really cannot believe it is one week already but at the same time that day feels like 100 years ago! It has been a week full of physical and emotional challenges. I pulled through it now it is all about taking each day one at a time.
Looking back over the last week I have accomplished and learned so much.
1. I accomplished getting through the surgery and getting out of the hospital. Before the operation I set goals for myself and I surpassed every single one of them. I am amazed at how resilent the human body is and how it can endure so much. I am still awestruck that I was only in the hospital for 48 hours and walked my self out! I probably should have been wheeled out but I was determine to walk. I figured if I walked myself in then I was going to walk myself out.
2. I have learned to be patient. I knew I would not walk out of the hospital at the same physical shape I walked in but it has been hard telling my mind to be patient of my body. I am really struggling with the fact that after a 15 min visit to Costco I am exhausted. Or that a walk around the cul-da-sac wears me out. In my mind I should be able to pick up where I left out, but my body needs to heal. That 4 hour procedure created weeks of time needed to heal. It is a daily battle but I am learning patience.
3. I am learning to accept support of others. Most of you know that I am a huge control freak. I like things done my way so I just do everything myself. This operation has made me realize that there are times in life where you have to take a step back and allow others to help. I have had to let others step in for me at work and at home, and it has been challenging to hand over those reigns. I am so grateful Jason and my Mom are here to take care of me but it has been a big blow to the ego. The first day I tried to get up at the hospital and I needed Jason to lift me to a sitting position was the lowest point. But I physically could not do it. Each day I get stronger and have less restrictions but it will be some time until I am 100% self sufficient. With that said, I am so grateful for all of the support of family, friends, and co-workers. Jason and I are amazed by everyone that has stepped out to provide assistance.
4. I learned I am really strong emotionally and physically. Despite the anxiety nearly knocking me off my feet before the operation, I tried to stay positive. When talking to others I forced myself to stay up beat and positive, even if I was cringing on the inside. That helped keep me focused and not fall victim to the nerves. Now after the operation, I still try to stay positive. I try not to complain about the pain even at times when each breath is so challenging. I realize it is suppose to be painful...um my chest did get cracked open. But I can either accept the pain and move forward or complain and given in. The latter is not an option in my mind. I force myself to get up every morning to shower and plan events to accomplish for the day. I have to keep pushing myself or I will give up and not recover. It is so easy to just give in to the pain or the physical challenges, but I owe to myself, Jason, and my family to work really hard to recover. I truly believe staying positive and pushing myself as led to a lot of success. Jason keeps telling me I am recovering like a champ and make it look so easy. He just doesn't see how I feel on the inside :o)
Another item I have realize this week is how awesome Jason is as a husband and best-friend. I think this event made us stronger and made us both realize how lucky we are to have each other. I could not ask for a better person in my life.
Tomorrow is my one week check up. I am looking forward to seeing Dr. Hijazi. I have lots of recovery questions to ask and I know he will be able to ease my mind on some of my worries. Speaking of doctors I have lots of thank yous to write to the various teams and Rush that cared for me. Espeically the PICU nurses as they were the ones who kept an eye on me at every moment. I will never forget them. Also to the surgical team as they fixed my broken heart and made it so much better. Oh and of course Dr. Hijazi. He is an amazing doctor that has a true passion and gift for helping people. I am so inspired by him to give back to the greater good.
So one week down and many more to go! I look forward to tracking my progress and be able to look back at how far I have come. I also hope I can pay things forward and assist anyone else going through similar operations that I had. One percent of children are born with cogenital heart defects so there has to be a lot I can do to help others get through the challenges.
I hope you all are having a great week! Thank you all again for everything!
Lots of Love,
Maegan
Looking back over the last week I have accomplished and learned so much.
1. I accomplished getting through the surgery and getting out of the hospital. Before the operation I set goals for myself and I surpassed every single one of them. I am amazed at how resilent the human body is and how it can endure so much. I am still awestruck that I was only in the hospital for 48 hours and walked my self out! I probably should have been wheeled out but I was determine to walk. I figured if I walked myself in then I was going to walk myself out.
2. I have learned to be patient. I knew I would not walk out of the hospital at the same physical shape I walked in but it has been hard telling my mind to be patient of my body. I am really struggling with the fact that after a 15 min visit to Costco I am exhausted. Or that a walk around the cul-da-sac wears me out. In my mind I should be able to pick up where I left out, but my body needs to heal. That 4 hour procedure created weeks of time needed to heal. It is a daily battle but I am learning patience.
3. I am learning to accept support of others. Most of you know that I am a huge control freak. I like things done my way so I just do everything myself. This operation has made me realize that there are times in life where you have to take a step back and allow others to help. I have had to let others step in for me at work and at home, and it has been challenging to hand over those reigns. I am so grateful Jason and my Mom are here to take care of me but it has been a big blow to the ego. The first day I tried to get up at the hospital and I needed Jason to lift me to a sitting position was the lowest point. But I physically could not do it. Each day I get stronger and have less restrictions but it will be some time until I am 100% self sufficient. With that said, I am so grateful for all of the support of family, friends, and co-workers. Jason and I are amazed by everyone that has stepped out to provide assistance.
4. I learned I am really strong emotionally and physically. Despite the anxiety nearly knocking me off my feet before the operation, I tried to stay positive. When talking to others I forced myself to stay up beat and positive, even if I was cringing on the inside. That helped keep me focused and not fall victim to the nerves. Now after the operation, I still try to stay positive. I try not to complain about the pain even at times when each breath is so challenging. I realize it is suppose to be painful...um my chest did get cracked open. But I can either accept the pain and move forward or complain and given in. The latter is not an option in my mind. I force myself to get up every morning to shower and plan events to accomplish for the day. I have to keep pushing myself or I will give up and not recover. It is so easy to just give in to the pain or the physical challenges, but I owe to myself, Jason, and my family to work really hard to recover. I truly believe staying positive and pushing myself as led to a lot of success. Jason keeps telling me I am recovering like a champ and make it look so easy. He just doesn't see how I feel on the inside :o)
Another item I have realize this week is how awesome Jason is as a husband and best-friend. I think this event made us stronger and made us both realize how lucky we are to have each other. I could not ask for a better person in my life.
Tomorrow is my one week check up. I am looking forward to seeing Dr. Hijazi. I have lots of recovery questions to ask and I know he will be able to ease my mind on some of my worries. Speaking of doctors I have lots of thank yous to write to the various teams and Rush that cared for me. Espeically the PICU nurses as they were the ones who kept an eye on me at every moment. I will never forget them. Also to the surgical team as they fixed my broken heart and made it so much better. Oh and of course Dr. Hijazi. He is an amazing doctor that has a true passion and gift for helping people. I am so inspired by him to give back to the greater good.
So one week down and many more to go! I look forward to tracking my progress and be able to look back at how far I have come. I also hope I can pay things forward and assist anyone else going through similar operations that I had. One percent of children are born with cogenital heart defects so there has to be a lot I can do to help others get through the challenges.
I hope you all are having a great week! Thank you all again for everything!
Lots of Love,
Maegan
Saturday, November 7, 2009
Let the Bruising Begin...Yuck!
I woke up this morning to a horrific site...lots and lots of bruising all over my body. My entire left side of my chest is a nasty yellow/green bruise. Does not hurt to touch but it is not very sightly. My left forearm is a lovely pale blue/purple from the A-Line. There is also bruising on my thigh from the cath tape. All of this was a bit of shock but not unexpected. Hopefully it does not last long cause it really is not pretty! We removed my chest tube bandage last night and I thought Jason was going to gag. For some reason they leave them as open wounds and allow the skin to heal itself. My prior chest tube incision were stitched together. So when that bandage came off it was a pretty icky sight. It looks like a wide and deep paper cut. I try not to look at it. Immediately we put fresh bandages on but it got some time to breath. The surgeon could have warn me what it was going to look like after 48 hours. I mean not all of us are familiar with open wounds :o)
Today was great in terms of moving about. The weather was perfect with lots of sun, 70+ degrees, and not a cloud in the sky. Jason and I went on a few walks and I even sat outside for 30 mins or so. Was so good to soak up the vitamins of of the sun. I got to chat with most of my neighbors and they are all so sweet.
I also got out of the house for a bit to get my hair professionally washed. Even with a hand-held shower head, it is too hard to wash my hair without getting my incision wet. So I went to the nearest hair salon for a wash. It felt great! Something about clear hair is so revitalizing!
Annie came home today from the PetHotel!! It is so good to have her home! The house was so quiet without her. I think she knows something is wrong with me because she is avoiding me like the plague. I appreciate her not trying to jump on me but I wouldn't mind some cuddling. I am intrigued by her ability to sense something is different. Dogs are so smart!
The pain is getting better each day. I feel like the back spasms are letting up but I may just be getting used to them. Jason said the muscles in my back are still really tight :o( Also my hips pop every time I go from a sitting to standing position. By poor skeleton is just all out of whack! Hope it can fix itself.
I am enjoying some good sleeps. I do not hesitate napping or going to bed early. My mind and body are soaking up all of this relaxation and not taking it for granted. I love that my only concerns for the day are when to sleep and eat. I have not had so little on my mind in years! I could get very used to this. I started a Christmas craft today too and love just being able to do something I enjoy. I am very thankful for this recovery time for many different reasons.
My eyes are getting heavy so it is time to say G'Night! Have a wonderful Sunday tomorrow!
Lots of Love,
Maegan
Today was great in terms of moving about. The weather was perfect with lots of sun, 70+ degrees, and not a cloud in the sky. Jason and I went on a few walks and I even sat outside for 30 mins or so. Was so good to soak up the vitamins of of the sun. I got to chat with most of my neighbors and they are all so sweet.
I also got out of the house for a bit to get my hair professionally washed. Even with a hand-held shower head, it is too hard to wash my hair without getting my incision wet. So I went to the nearest hair salon for a wash. It felt great! Something about clear hair is so revitalizing!
Annie came home today from the PetHotel!! It is so good to have her home! The house was so quiet without her. I think she knows something is wrong with me because she is avoiding me like the plague. I appreciate her not trying to jump on me but I wouldn't mind some cuddling. I am intrigued by her ability to sense something is different. Dogs are so smart!
The pain is getting better each day. I feel like the back spasms are letting up but I may just be getting used to them. Jason said the muscles in my back are still really tight :o( Also my hips pop every time I go from a sitting to standing position. By poor skeleton is just all out of whack! Hope it can fix itself.
I am enjoying some good sleeps. I do not hesitate napping or going to bed early. My mind and body are soaking up all of this relaxation and not taking it for granted. I love that my only concerns for the day are when to sleep and eat. I have not had so little on my mind in years! I could get very used to this. I started a Christmas craft today too and love just being able to do something I enjoy. I am very thankful for this recovery time for many different reasons.
My eyes are getting heavy so it is time to say G'Night! Have a wonderful Sunday tomorrow!
Lots of Love,
Maegan
Friday, November 6, 2009
Day 3 of Recovery
I really cannot believe it is Friday and Day 3 of recovery. I feel like this week went so fast but at the same time Tuesday seems like a 100 years ago. So weird.
I slept pretty well last night in my bed. There were a few times it took a while to find a comfortable spot, but I snoozed for about 9 hours. Still trying to catch up on a few nights without any sleep. M
y back is still in a lot of pain. I called my massage therapist and of course he wants written consent from the surgeon. A nurse at Rush was suppose to get a hold of a surgeon and find out if getting a chair massage is okay. I have not heard back so I guess it will be awhile until I have relief from the muscle spasms taking place :o( Poor Jason is doing as much as he can to help relieve the pain but I need someone who knows all the tricks. I have no other choice but to be patient and try to sit and lay in ways that reduce the pressure.
Being able to shower is the most amazing part! I will never take that for granted again. Being clean really does help a lot with the recovery. I had so many sticky marks from all of the bandages. Also got to notice all the bruising and scraps from the various IVs and clamps that were on me. I kinda look like damaged goods. Luckily all things will heal. The swelling in my left hand where the IV was has finally gone down. I think the vein the IV was in collapsed because it got so sore and they could no longer pass drugs through it yesterday. Ick. I can finally get my wedding ring back on which makes me smile!
My parents got us this amazing leather recliner! Such an amazing gift and it is so comfortable and pretty! We had thought about getting one because I read from others that recliners are amazing recovery tools. My parents were so sweet and went out and got me one. It really does help!
I also started walking today. This morning I went around our cul-da-sac twice and then this afternoon I went around our cul-da-sac and the one next to us. Each time I want to go just a little further. I have not gotten fatigued yet so that is great! The stairs have not been a problem yet either.
Jason has been the best care giver. He is so caring and really does whatever I need. So thankful for him and my family being here. The delivery man has visited twice today which is exciting! It is like Christmas! I am over joyed by all the kindness and support.
Tonight I am going to try to get the bandage off from my chest tube. The surgeon said after 48 hours I could remove it. The tape used is like duck tape. So sticky!! Not sure how to get it off without taking skin with it. Kinda nervous to see the incision from the chest tube. I have the scars from the first surgery and they were pretty deep. Hopefully this one looks better. For my first surgery I had three chest tubes - one at the base of my incision and then one on each side of rib cage. Dr. P said he removed the one at the base of my incision so that should look a lot cleaner.
I have a picture of my incision bandaged up but it may be too gruesome to post. I will think about it. No need to gross you all out but it is kinda of cool to see.
Jason is starting me on the three seasons of Arrested Development. Hoping I do not laugh so hard it hurts :o)
Have a great night!
Maegan
I slept pretty well last night in my bed. There were a few times it took a while to find a comfortable spot, but I snoozed for about 9 hours. Still trying to catch up on a few nights without any sleep. M
y back is still in a lot of pain. I called my massage therapist and of course he wants written consent from the surgeon. A nurse at Rush was suppose to get a hold of a surgeon and find out if getting a chair massage is okay. I have not heard back so I guess it will be awhile until I have relief from the muscle spasms taking place :o( Poor Jason is doing as much as he can to help relieve the pain but I need someone who knows all the tricks. I have no other choice but to be patient and try to sit and lay in ways that reduce the pressure.
Being able to shower is the most amazing part! I will never take that for granted again. Being clean really does help a lot with the recovery. I had so many sticky marks from all of the bandages. Also got to notice all the bruising and scraps from the various IVs and clamps that were on me. I kinda look like damaged goods. Luckily all things will heal. The swelling in my left hand where the IV was has finally gone down. I think the vein the IV was in collapsed because it got so sore and they could no longer pass drugs through it yesterday. Ick. I can finally get my wedding ring back on which makes me smile!
My parents got us this amazing leather recliner! Such an amazing gift and it is so comfortable and pretty! We had thought about getting one because I read from others that recliners are amazing recovery tools. My parents were so sweet and went out and got me one. It really does help!
I also started walking today. This morning I went around our cul-da-sac twice and then this afternoon I went around our cul-da-sac and the one next to us. Each time I want to go just a little further. I have not gotten fatigued yet so that is great! The stairs have not been a problem yet either.
Jason has been the best care giver. He is so caring and really does whatever I need. So thankful for him and my family being here. The delivery man has visited twice today which is exciting! It is like Christmas! I am over joyed by all the kindness and support.
Tonight I am going to try to get the bandage off from my chest tube. The surgeon said after 48 hours I could remove it. The tape used is like duck tape. So sticky!! Not sure how to get it off without taking skin with it. Kinda nervous to see the incision from the chest tube. I have the scars from the first surgery and they were pretty deep. Hopefully this one looks better. For my first surgery I had three chest tubes - one at the base of my incision and then one on each side of rib cage. Dr. P said he removed the one at the base of my incision so that should look a lot cleaner.
I have a picture of my incision bandaged up but it may be too gruesome to post. I will think about it. No need to gross you all out but it is kinda of cool to see.
Jason is starting me on the three seasons of Arrested Development. Hoping I do not laugh so hard it hurts :o)
Have a great night!
Maegan
Thursday, November 5, 2009
Identification Card
Sweet! My valve has a serial and model number! I get to carry this awesome card around for life :o)
Hope that little cow knows how thankful I am for the new heart part. Good thing I am not a vegetarian!
In My Case Smaller is Better....
Had my echocardiogram and the pictures showed good things!! My right ventricle is already shrinking even though they did not expect to see results for a few months. Also the valve is working perfectly with no regurgitation. Without a valve I had 60% and now I have 0%. My diaphram is free from fluids and my breathing is good. I find that hard to believe because it is still painful to take in deep breaths. Also, Dr. Hijazi visited me!! I was so excited to see him and have him review the echo while the tech was still in the room. I feel a lot more confident now that he has sorta reviewed things. While I was getting new heart parts, he was in Kuwait fixing lots of hearts. So awesome how much he helps people around the world. Received my discharge papers and there is nothing on there for pain meds. All it says is to take Motrin every 4 hours. Really? I just had my chest cracked opened two days ago. Eek! I have a call into the surgeon to verify this....
Met with a person from Physical Therapy and she showed me how to lay and sit while at home. She gave some great tips that I wish I would have known Tuesday when I was in so much pain. Hopefully now I can take care of any future back problems.
So being on the PICU really opens your eyes to how special every day is. There are little babies that have to be in a lot of pain but they just coo and smile at you. It is also heartbreaking because very few of them have parents at the hospital. Guess they are needing to be here so long and parents still need to work and care for other children. Just heart breaking to see them in their rooms all by themselves. I guess the nurses and doctors have become part of their family now.
I will let you know when I get home!
Maegan
Met with a person from Physical Therapy and she showed me how to lay and sit while at home. She gave some great tips that I wish I would have known Tuesday when I was in so much pain. Hopefully now I can take care of any future back problems.
So being on the PICU really opens your eyes to how special every day is. There are little babies that have to be in a lot of pain but they just coo and smile at you. It is also heartbreaking because very few of them have parents at the hospital. Guess they are needing to be here so long and parents still need to work and care for other children. Just heart breaking to see them in their rooms all by themselves. I guess the nurses and doctors have become part of their family now.
I will let you know when I get home!
Maegan
Surgery from My Eyes...
Good Morning!! I am going home today! I am amazed that 36 hours after open heart surgery I can go home. I was planning on being here until Saturday so an early release is great news! As I wait for my surgeon to come by, I thought I would recap the event from my eyes and what I experienced.
Tuesday morning was probably the most nervous day of my life. Probably for Jason too. For my parents, I am guessing it was their second or third. We got to the hospital an hour early but that worked out best because they were able to start my registration before the crowd. From that point on everything went super fast. The hardest part was saying farewell to my parents as I went to the holding and changing area. They were strong though so that helped. Jason went back with me and we tried to make light of the entire situation. My surgical outfit was a bit amusing. The gown was huge and insulated, so as soon I as put it on I was burning up. The hat was hilarious. It was a silver thermo hat and made me look like an alien. After I was changed and my vitals taken, Jason and I went up to the surgical floor. That walk and 1 floor elevator ride was the longest moment in my life. I think that is when all the nerves hit. I tried to stay brave for Jason's sake. I was immediately put on a gurney and my gown was filled with hot air. Apparently, having a warm body during surgery helps coming out of the anesthesia. Once I was warm and toasty the anesthesiologist came in and started the happy drugs. Soon after I had to say farewell to Jason which was so hard. Glad I had those drugs so I didn't get emotional. The anesthesiologist started me on my journey to the OR. I clearly remember the OR and having to put myself on the table. The last thing I remember was seeing a big storage box with hundreds of sharp tools. Then I felt a buring sensation in my arm and I was out. The next thing I remember was coming out of a dream about bears. And people saying hello to me. Immediately I asked two questions (1) cow or pig? and (2) did she start on her own? The answer to the first question was cow. A 2.4cm in diameter cow valve was used which should last 10-15 years. The answer to the second question was yes, my heart did start on her own when they warmed it up after being on the heart-lung machine. I remember replying "atta girl". I also woke up without the breathing tube! Woohoo. I did not want to let go of the oxygen though...that was good stuff. As I was being wheeled to the PCIU I was waving, high fiving doctors and nurses, and giving out a few knuckle bumps. I remember one doctor in the hallway asking "Did she just come out of surgery?" Apparently no one could believe I was so alert. Once I was in my room in seemed like a half dozen people were getting me settled with IVs, meds, etc. The senior cardiac nurse kept telling my family that my metabolism was just sucking up the meds and I was requiring a lot more than the average person. Later that day, my PICU nurse said the same thing to me and I told her that I do not do drugs. Haha! The day was a bit of a blur. I remember asking what time it was and I opened my eyes at 120pm. A bit longer than the 2-4 hour time frame I was told, but they took their time to fix me, so I was appreciative. Best part was opening my eyes and seeing Jason and my parents. At that point I knew everything was good. For the rest of the evening I just kept getting more drugs and I loved the drip button I could control. Unfortunately, the pain meds were not relieving my pain as well as they should have. The first night was pretty terrible. My back kept going into muscle spasms as I was stiff as a bored during surgery and then after my back muscles were trying to compensate for my chest muscles being injured. The night nurse tried to help me manage the pain but nothing was working. So it was a restless night. The next morning - so yesterday - I begged to get up. I knew my body just needed to move and stretch out. Spending 20 hours on a bed was not doing my body good. Around 930am I got up! It was the best feeling in the world! Immediately, my back loosened and felt so much better. So I got myself sitting in a chair and walking the floor as often as I could. Everyone was glad to see me up and moving so quickly after surgery. Towards the end of yesterday, I was also able to sit myself up without help. I am so thankful I am strong enough to bounce back so quickly. I would have been miserable still laid up. Removing the chest tube was fantastic! Didn't realize how uncomfortable that was until it was gone. It was funny because the nurse gave me 2 sedatives so I would feel the tube coming out. She said I would be really loopy and want to sleep. Um...I had no reaction to it. She said anyone else would be down on the grown and I didn't even flinch. Darn metabolism not letting that stuff settle. So yesterday was great!
This morning I am waiting for an echo and ekg and then I will be released. I am excited to see the echo with my new valve. Hoping Dr. Hijazi is here too so I can say Hi. I have been anxious to see him since Tuesday.
I cannot express enough how thankful I am for the thoughts, prayers, and support. I really would of not had the strength with out you all. I will never forget and hope one day I can personally thank you all. I am so blessed to have a great network of friends and family in my life.
Chat soon when I get home!
Lots of Love,
Maegan
Tuesday morning was probably the most nervous day of my life. Probably for Jason too. For my parents, I am guessing it was their second or third. We got to the hospital an hour early but that worked out best because they were able to start my registration before the crowd. From that point on everything went super fast. The hardest part was saying farewell to my parents as I went to the holding and changing area. They were strong though so that helped. Jason went back with me and we tried to make light of the entire situation. My surgical outfit was a bit amusing. The gown was huge and insulated, so as soon I as put it on I was burning up. The hat was hilarious. It was a silver thermo hat and made me look like an alien. After I was changed and my vitals taken, Jason and I went up to the surgical floor. That walk and 1 floor elevator ride was the longest moment in my life. I think that is when all the nerves hit. I tried to stay brave for Jason's sake. I was immediately put on a gurney and my gown was filled with hot air. Apparently, having a warm body during surgery helps coming out of the anesthesia. Once I was warm and toasty the anesthesiologist came in and started the happy drugs. Soon after I had to say farewell to Jason which was so hard. Glad I had those drugs so I didn't get emotional. The anesthesiologist started me on my journey to the OR. I clearly remember the OR and having to put myself on the table. The last thing I remember was seeing a big storage box with hundreds of sharp tools. Then I felt a buring sensation in my arm and I was out. The next thing I remember was coming out of a dream about bears. And people saying hello to me. Immediately I asked two questions (1) cow or pig? and (2) did she start on her own? The answer to the first question was cow. A 2.4cm in diameter cow valve was used which should last 10-15 years. The answer to the second question was yes, my heart did start on her own when they warmed it up after being on the heart-lung machine. I remember replying "atta girl". I also woke up without the breathing tube! Woohoo. I did not want to let go of the oxygen though...that was good stuff. As I was being wheeled to the PCIU I was waving, high fiving doctors and nurses, and giving out a few knuckle bumps. I remember one doctor in the hallway asking "Did she just come out of surgery?" Apparently no one could believe I was so alert. Once I was in my room in seemed like a half dozen people were getting me settled with IVs, meds, etc. The senior cardiac nurse kept telling my family that my metabolism was just sucking up the meds and I was requiring a lot more than the average person. Later that day, my PICU nurse said the same thing to me and I told her that I do not do drugs. Haha! The day was a bit of a blur. I remember asking what time it was and I opened my eyes at 120pm. A bit longer than the 2-4 hour time frame I was told, but they took their time to fix me, so I was appreciative. Best part was opening my eyes and seeing Jason and my parents. At that point I knew everything was good. For the rest of the evening I just kept getting more drugs and I loved the drip button I could control. Unfortunately, the pain meds were not relieving my pain as well as they should have. The first night was pretty terrible. My back kept going into muscle spasms as I was stiff as a bored during surgery and then after my back muscles were trying to compensate for my chest muscles being injured. The night nurse tried to help me manage the pain but nothing was working. So it was a restless night. The next morning - so yesterday - I begged to get up. I knew my body just needed to move and stretch out. Spending 20 hours on a bed was not doing my body good. Around 930am I got up! It was the best feeling in the world! Immediately, my back loosened and felt so much better. So I got myself sitting in a chair and walking the floor as often as I could. Everyone was glad to see me up and moving so quickly after surgery. Towards the end of yesterday, I was also able to sit myself up without help. I am so thankful I am strong enough to bounce back so quickly. I would have been miserable still laid up. Removing the chest tube was fantastic! Didn't realize how uncomfortable that was until it was gone. It was funny because the nurse gave me 2 sedatives so I would feel the tube coming out. She said I would be really loopy and want to sleep. Um...I had no reaction to it. She said anyone else would be down on the grown and I didn't even flinch. Darn metabolism not letting that stuff settle. So yesterday was great!
This morning I am waiting for an echo and ekg and then I will be released. I am excited to see the echo with my new valve. Hoping Dr. Hijazi is here too so I can say Hi. I have been anxious to see him since Tuesday.
I cannot express enough how thankful I am for the thoughts, prayers, and support. I really would of not had the strength with out you all. I will never forget and hope one day I can personally thank you all. I am so blessed to have a great network of friends and family in my life.
Chat soon when I get home!
Lots of Love,
Maegan
Wednesday, November 4, 2009
First Morning
After a quick nap, I came back to Maegan's room to find a bunch of good news. She's no longer on an IV, urinating in a bag, or hooked up to on-demand pain medication. Also, she had her chest tube removed. On top of that, she's able to walk around the floor and eat simple foods. All of this, happened within 24 of her getting to the ICU. She's a champ.
Perhaps the best news is that we should be heading home tomorrow, which is two days ahead of schedule and one day ahead of Maegan's goal date.
Perhaps the best news is that we should be heading home tomorrow, which is two days ahead of schedule and one day ahead of Maegan's goal date.
First Night
It was a challenging first night for Maegan. It's the tough to battle
and balance the pain, feeling ill, and sleeping in a hospital all at
once. Luckily, the nurses are super nice and always there to help with
anything. Maegan is staying very strong and is doing quite well in my
opinion. She's recovering great and with any luck she'll lose the IV
and chest tubes today. Also, we expect her to get on her feet and do a
little walking today. If she keeps this up, we'll be home before we
know it. I'm going to try to get a few hours of shut eye since I
haven't hardly slept since the alarm went off at 3:30 yesterday
morning. It's been a wild 27+ hours for sure.
and balance the pain, feeling ill, and sleeping in a hospital all at
once. Luckily, the nurses are super nice and always there to help with
anything. Maegan is staying very strong and is doing quite well in my
opinion. She's recovering great and with any luck she'll lose the IV
and chest tubes today. Also, we expect her to get on her feet and do a
little walking today. If she keeps this up, we'll be home before we
know it. I'm going to try to get a few hours of shut eye since I
haven't hardly slept since the alarm went off at 3:30 yesterday
morning. It's been a wild 27+ hours for sure.
Tuesday, November 3, 2009
Finally Done
Sorry for the delay, but great news. She is doing awesome and is
recovering in the PICU. Everybody said she did great and the
procedure went smoothly and without complications. I'll update again
later.
recovering in the PICU. Everybody said she did great and the
procedure went smoothly and without complications. I'll update again
later.
Checkpoint 2
We just heard from the nurse again. Maegan is off the bypass machine
and her heart is beating on its own again. The doctors are going to
observe for about another 60-90 minutes. Great news so far! I can't
wait to see her in the PICU.
and her heart is beating on its own again. The doctors are going to
observe for about another 60-90 minutes. Great news so far! I can't
wait to see her in the PICU.
Checkpoint
Just heard that the new valve has been put in and now we're waiting
for the procedure to be finished. Another hour or two.
for the procedure to be finished. Another hour or two.
Go Time
Maegan is modeling her beautiful outfit.
Maegan and me of course.
She's got her IV and she's ready to go.
I'm back in the waiting room and she's prepped and ready go. Check back in a few hours for an update.
Monday, November 2, 2009
Pre-Op! Read All About It....
So my pre-op screening took over 3 hours! Pretty sure I was just waiting around for 2.5 of the 3 hours! I had blood taken (3 vials...ick!), an EKG, and a chest x-ray. Then I met with the anesthesiologist, senior cardiac nurse, and the attending doctor. Amazing how each doctor had their own version of the operation I will be having. Luckily they all versions were similar. The best doctor was the anesthesiologist! He was honest and informative but actually had some personality. That team is awfully important so I am glad I got some good vibes. Things were a little disorganized I suppose as the main pre-op nurse made the comment "Not sure what to do as adult open heart patients don't come here anymore..." Jason and I just looked at each other and laughed. As long as the surgeon and surgical team have things under control, then I will just go with the flow for everything else. Also got see the PICU. Yes, I will be the oldest person in Pediatric ICU! The private room was tiny! Poor Jason will have this little chair to sleep on. Hoping I am not in there too long.
Tomorrow...need to be at registration between 530-6am. Operating time is scheduled for 715am. Looks like we will need to leave home around 4-430am! Yikes! Jason will post when I go in and get out of the OR.
Thank you all so much for the thoughts and prayers. It means so much to my family, Jason, and myself to know so many people are there for support.
Chat with you all as soon as I can! Looking forward to getting this completed and moving on with a stronger and healthier heart!
Lots of Love,
Maegan
Tomorrow...need to be at registration between 530-6am. Operating time is scheduled for 715am. Looks like we will need to leave home around 4-430am! Yikes! Jason will post when I go in and get out of the OR.
Thank you all so much for the thoughts and prayers. It means so much to my family, Jason, and myself to know so many people are there for support.
Chat with you all as soon as I can! Looking forward to getting this completed and moving on with a stronger and healthier heart!
Lots of Love,
Maegan
Pre-Op Day
Maegan waiting to as she's in between pre-op tests.
Pre-Operation Appt @ 11am
Going in for my Pre-Operation appointment today at 11am. Jason may try to test blog to make sure it works from his phone. Lots of prep to do for tomorrow! I feel like I am getting ready for a big event or something :o) Keep you posted on how today goes!
Maegan
Maegan
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