Diary of/Update on Melanie's Progress

Hello again & Happy New Year! :)

2008-01-01T21:58:00.001-06:00

I apologize for not writing sooner. As I mentioned before, changes just are not happening as quickly as they once were. Tomorrow, I start back to work. Yes, my foot is still broken (I think). I am going back to work part-time to start out with and only in my wheelchair. I am a little nervous because going back in a wheelchair will be different....I am afraid that I will not be able to go as quickly in it that I go on my feet. I hope that this foot heals up soon so that I can try walking on it again! I love the group that I work with. I have found that I can get my wheelchair OUT of my car, but trying to get it back in (WHILE balancing on one foot) has not been successful. So, my manager told me that they can help me get my WC into my car at the end of my shift - how awesome is that!

Part of me is SO GLAD to go back to work just so that I am not home by myself and will have something else to focus my energy on. The other part of me is SO NERVOUS. Believe it or not, the printing and copy business changes quite rapidly. I have been gone for six months - a lot has changed.

Fortunately, tomorrow will involve me catching up on some computer training. No-brainer! I am supposed to see my foot/ankle specialist soon, as well as the neurologist that treats me for nerve pain. I should have a longer update when that happens.

Same ol', same ol'....

2007-11-30T16:12:00.000-06:00

Hey there, all! This will just be a quick update because there has not been much that has changed. My foot is still broken, but my wound is healing. More importantly, my soul is healing. There have been some times in the recent past when I have been pretty down and I just haven't really felt like myself. It is nice to get to feeling more like myself again.

One bit of new good news is that I did have a check-up with my cardiologist and my heart seems to be doing great! THAT is definitely something to praise God about!!! :)

Hello again!

2007-11-20T20:48:00.000-06:00

My sincere apologies for the delay in posting! Things have seemed to kind of stay steady for a while - up until now, there have been no significant good or bad changes. Now, I have a little of both!

On the night of November 14, I noticed that my foot swelled (only my foot, not my leg) quite a bit and turned a reddish-purplish color. Lance and I called it my "mood foot" because it tended to turn more red and then later it would become more purple. Obviously worried, Lance took me to my Family Doctor the next day. Because I have a wound on the outside of my foot that I cannot seem to get rid of, the doctor said that there seemed to be an infection in my foot. I was given an antibiotic ointment, as well as an oral antibiotic, AND she sent me to my foot/ankle specialist the next day. He looked at it and agreed that I probably did have an infection, and wanted to do an x-ray to be sure that the infection had not gone into the bone. He came back into the room after viewing the x-ray. It turns out that my foot is now broken! It actually is not a clean break; it's a stress fracture. I have to stay completely off of it. Hopping around on one foot constantly is no easy feat and it WILL wear you out! :) I never knew that it was broken because I have not been able to feel my foot. How weird is that?

So, what's the good news? Well, the day after we realized that my foot was broken, my foot decided that getting some feeling back might be a good idea - GREAT timing! Hey, I'm not complaining, but it's just ironic! I still cannot feel touch, but I can feel things on the inside of my foot (i.e. stretching, pain, throbbing, aching, etc...). PLUS, I also can move my foot UP a little more now (this is something that I have not consistently been able to do). Go figure...Who knew that a stress fracture could turn out to be a good thing?

Well, that's all for now! I will try to keep you more updated!

P.S. - Hi Vicky! ;)

Going strong...

2007-10-18T21:38:00.000-05:00

Well, in just a week and a half, I have already improved in foot movement. As for getting my heel to touch the floor? We're getting there, slowly but surely. On my very first day of therapy, Jennifer (my therapist) measured the angle from my heel to the floor. Even with her pushing on it to help me, I was 45 degrees from the ground. After 5 treatments, I am maintaining a 30 degree angle. So, in just a short time I have gained a total of 15 degrees. One of the things that I really like about this therapy clinic is that my movement is measured each time before we get started and then after I have been massaged (not the pleasant kind, need I remind you) and stretched.

The only bummer right now? I am sick, sick, sick. All last week, I had bronchitis. Then Lance got this head cold thing that seems to be going around, and he has now graciously shared it with me. So, I'm coughing and hacking all of the time because I still have not gotten over my bronchitis, and now my head feels stuffy and my nose has turned into a drippy faucet. Misery...

An added thing? It's not a big deal, but we are hosting an Air Show Party at our house this Saturday, so we've been trying to get things ready for that on top of Lance and me (AND Mom) being sick. We're pretty cranky. If my cold follows the same pattern Lance's did, I should be fine by the time of the party - or at least on the downward slope. :)

Still moving...

2007-10-12T19:20:00.000-05:00

Life truly is all about the little things, isn't it? What's truly amazing to me is that a small thing to one person may very well be a HUGE thing to someone else. Isn't that funny about how life works? I guess it's all about one's perspective.

Take today, for example. Before all of this happened, if someone told me that they were able to move their foot, I probably wouldn't think too much about it. Now, I can truly understand the little celebrations in life. TODAY, I started moving my foot outwards...away from my body. Even before, at my best in the AFO, I wasn't able to do that. Granted, it's not like it moves very far, but it's a baby step. Also, I am ALMOST to the point where I can get my heel to touch the floor. In just two days' time, I have gained 5 more degrees. Again, this doesn't sound like much, but it is so encouraging for me. Additionally, while I still can't feel a sense of touch on my foot or ankle, I feel a tingle inside my foot when someone grabs it, and I can FEEL that it's aching throughout the day. It's amazing.

While I really use this as a diary of my progress more than anything, for those of you that are still reading this, please do me a favor - don't take the little things for granted. Walking is truly a blessing. I used to complain when I had to walk far distances about how my feet would start to hurt. Now, I long for that feeling - to be able to walk a long distance and FEEL the pain in my foot. As funny as it sounds, I don't take peeing for granted anymore either. Take it from me - when you can't do it, and a machine basically has to function as your kidneys, you miss that "freedom". I was only on dialysis for a month; I can't imagine the people that have to do it forever (life my dad did before he passed away). As strange as this may sound, I find it such a blessing that I am able to pee...it truly is a beautiful sound. :)

I apologize for being more philosophical. I've been in an odd mood lately. On the one hand, I feel incredibly blessed for how far I have come, for the support that I have from friends and family, and for just being alive. On the other hand, I'm so very angry. I'm mad that I wasn't given hope by two different doctors, and yet I've come so much farther than either of them thought (or told me) that I would. What kind of doctor tells someone, in a pediatric hospital, no less, that they probably will never walk again without even seeing them try? What kind of doctor would tell someone that amputating their leg is not a big deal? OF COURSE it's a big deal. It's your leg; you know, the one you've had your entire life. I'm mad that the whole thing happened with my leg to begin with. Yes, my life was saved and the damage done to my heart was corrected (which, please don't misunderstand me, I am extremely thankful for), but I wonder sometimes if there wasn't some neglect there as well. I know that it wasn't the surgeon's job to watch the heart-lung bypass machine because he was quite busy operating on my heart, but who was responsible for that? Should they be held accountable? I feel like sending them a letter to remind them to use me as an example, so that no other patient develops compartment syndrome this way (it's usually related to sports injuries). No worries...I'm not the type to sue someone. Even if I were, it wouldn't make me feel any better, and it wouldn't take back what has happened to my leg. But, while I am encouraged every day by little bits of progress, I also feel like I am grieving - I am grieving the loss of the freedom that I had with two legs that get me from point A to point B with no problem and little energy/effort. I feel split in two, almost like I am two different people. There is one Melanie who people think and say is a strong person and who is inspirational, motivating, even miraculous. That Melanie feels so blessed and thankful to God that I am able to sit here and type this blog, and that there wasn't more damage done during surgery. There is another Melanie though that doesn't feel so strong some days, that is saddened and angered by everything that has happened, and that doesn't understand or make sense of anything. Does that make any sense? Does it sound selfish?

So see, life is really about the little things in life. It's about not taking the "small" things for granted. Since I've had some extra time on my hands lately, I've done a considerable amount of thinking and trying to make sense of everything. I read a few quotes recently that I will leave you with.

"Enjoy the little things, for one day you may look back and realize they were the big things." -Robert Brault

“Some days you tame the tiger. And some days the tiger eats you for lunch.” -Tug McGraw

“All the art of living lies in a fine mingling of letting go and holding on.” -Havelock Ellis

Don't worry, be happy...

2007-10-09T22:35:00.000-05:00

I am so happy to say that, even though I knew it in my heart, everything is fine. Lynne (my wonderful mother-in-law) and I saw my new ortho on Friday, and we BOTH liked him so much better. Right out of the gate, he ordered x-rays, which was something that neither of the other two orthos ever did. That immediately made us feel like this doctor was much more competent. He told us that my bone structure looked good. Despite bad habits that are sometimes formed when learning to walk correctly, my bone structure has not been altered in any way (apparently, this is excellent news because it tends to happen - who knew?). He also told us that the walking boot that I had originally was given was "archaic and dangerous" and said that I should have never been put in an AFO (hard, plastic) brace. Because I have no feeling in my foot, I have no clue if a hard surface is rubbing against my skin in an uncomfortable way. It turns out that the AFO was rubbing against the bottom and side of my foot, and as a result, I have these sores on my foot. So, he told us that until I regain feeling in my foot, I should not wear anything that is hard that could rub wrong on my foot (makes total sense).

When we told him about the other two ortho docs and what they had to say about everything, he said that I should have NEVER been told that I needed an amputation. He confirmed what the neurologist said and what my family and I have felt all along - there hasn't been enough time that has passed for me to have the nerve regeneration in my ankle and foot. I have no infection and no signs of gangrene. I have a pulse in my foot and a good blood flow. He said that I have had enough surgeries in my life for 20 people, and that we were going to do whatever we could to prevent any type of surgery. He is referring me to an additional ortho that JUST specializes in the foot and ankle (but I will still be keeping this one as my general orthopedic doctor). He immediately gave me a new boot that is more stable (and stylish). It has a hard, rigid shell for stability like the AFO, but has a soft, foam inner core that touches my skin for protection against rubbing. He also told me that because my ankle is stiff and does not have much range of motion, AND I still am unable to raise my foot towards the ceiling, that my foot and ankle should not be forced into a 90 degree angle. The boot that he put me in has an adjustable ankle angle (say that 5 times fast), and is currently set at 30 degrees. As my ankle loosens up and as I regain feeling in my foot, the angle will be adjusted.

He was also upset that I had not had therapy in 4 weeks. He said that I should have NEVER been taken off of therapy, and that even though he was referring me to this foot/ankle specialist who would be following me more closely, he would prescribe me for therapy until I get in to see the specialist. Needless to say, we are all so happy with this news and this doctor.

I started therapy today again, but this time with a new therapist at a new facility. I really liked her. I told her that I was strong-willed, a fighter, and that I would push myself, but that I also wanted her to push me so that I would become better as fast as I can, but in a healthy way. I know what my limits are and when I need to stop, but I don't know what I can accomplish unless someone (in addition to myself) is pushing me. So instead of the 30 minute sessions twice a week that I was doing at the other center, I will now be going three times a week for at least 45 minutes. I remember being told in the hospital that I would cry in therapy, but that in order to get things back to the way they were before the surgery, things have to be pushed. Because I was told this, I found it unusual that I only cried in therapy once or twice at the old therapy center. Today was my first day in therapy and I cried - just a little. Because my leg, ankle, and foot are SO TIGHT, we have to get them loosened up. The therapist, Jennifer, told me that it's not just he muscles that are tight; it's the tissues too. She gave me a 15 minute tissue massage in my right leg, and she discovered some knots in the muscles. I normally LOVE massages, but this was not a pleasant one. The only way to get rid of knots is to rub them out, and I won't lie - it's painful. She told me about a tool that I could buy to help me massage the tissues myself at home.

One really cool thing that happened today is that in her initial assessment, she measured the angle of my ankle ROM (range of motion). After she did the tissue massage and then stretched me for MAYBE 5 minutes, she measured the ROM again. Just in that short time, I gained 10 degrees from side to side and 4 degrees going up and down. While it doesn't sound like much, it's improvement, and Jennifer says that that shows potential, and that because I have potential, I should have never been told that I needed amputation. Are we noticing a recurring theme here? The ONLY person who has even mentioned amputation is the crackpot doctor (I won't mention what Lance calls him), and we all know that I will not be going back to him. :)

It's been a while

2007-10-04T13:45:00.000-05:00

Please forgive the horrible length of time that has passed since I last posted. Since A LOT has happened, I will try to give a short version of everything, but you know how I am...I kind of go on and on and on....

Chapter 1 - Everything had been going well. The pressure wound/spider bite on the top of my foot (no one could really decide what it was exactly) got better and the swelling went down. I was fitted for an AFO brace (a hard, plastic brace that runs along behind the back of my leg to the underside of my foot). I was back at work part-time and started back to school (just for one class, but it's a start). Things were excellent! My life was feeling somewhat normal again. I was in the process of looking for a new orthopedic doctor that treats ADULTS, but with no success since I had just had a leg operation a few months ago. Unfortunately, since things seemed to be going well, I wasn't trying TOO hard in my search.

Chapter 2 - Another reason for wanting a new Ortho Doc is because Lance, my mom, my grandmother, and me have not had a whole lot of confidence in this doctor from the beginning. Apparently, when I was "out" in the hospital, and Dr. Capelo (the ortho doc) was talking to Lance and Mom about needing to perform the leg surgery, some things that he said did not go over well with Lance. Since the leg surgery took place the day after the lengthy heart surgery, Lance's concern was that if my heart was stable enough yet for another operation. Dr. Capelo replied, "Her heart is not my concern. Her leg is my concern." As you can imagine, this did not go over well with Lance OR anyone in my family. Regardless, the operation took place. Afterward, Lance asked Dr. Capelo about how my heart was doing after the surgery. Capelo answered, "Again, her heart is not my concern. My focus is her leg." If that was not reason enough for our lack of confidence in him, once I came to, Capelo told me that I may never walk again. I remember telling him that he did not know how stubborn I was, and that I would walk again. I don't believe in doctors giving patients a false sense of hope, but COME ON, he's a pediatric doctor. One would THINK that he would at least give me SOME kind of hope. Regardless, I proved him wrong. I learned to walk with a walker; I learned to walk with just a walking boot; I learned how to walk in the AFO brace; I could even walk without anything, but it didn't look pretty. Never underestimate the strong will of a Sheeds/Wilson/Dewey woman! Next, I saw him in his office a couple of months after my operation. At that point, I was still in the boot, about to be fitted for an AFO. Despite the fact that nerves regenerate at only an inch per month, and I originally could not feel from the knee down, Capelo told me that if I had not had movement or feeling in my foot by then, then it would probably never happen (again, where's the hope?). I told him that he might as well release me to go back to work then. He replied by asking me if I was sure if I was ready to go back to work and be on my feet again. I said, "Well, the way I see it, it doesn't really matter. If this is as good as it is going to get, I have to get back to my normal life at some point." Capelo spoke with my physical therapist and told her that we should stop therapy. I asked my therapist if we could go just a few times more. Three days later, I HAD FOOT MOVEMENT! The therapists in the therapy center were excited and celebrating. What did Capelo know? Therapy would continue... So you can see why I did not trust my Ortho and was looking for a new one.

Chapter 3 - It truly feels good to be on the road to success! It's just too bad that it couldn't last too long. On September 15th (the day before Lance's birthday), my leg became very tight, very uncomfortable to walk on, I developed two sores on the bottom of my foot that bled any time I put weight on them, and I was experiencing these HORRIBLE charlie-horse-like pains constantly in my leg. I am a pretty tough chick, and I can handle pain. These pains made the nerve pain that I have been experiencing nothing. They would cause me to double over and SOB. It was excruciating. The longer the day went on, the worse the pain became. We went to the ER at Harris (not at Cooks where Capelo practices). They ran all types of tests and diagnosed me with Reflex Sympathetic Dystrophy (RSD). Another thing that had happened suddenly was that I was unable to touch my heel to the floor. I was given pain medication and sent home. In the next few days, I had a few doctors' appointments, some of which were already scheduled as routine check-ups. My neurologist told me that the ER had misdiagnosed me, and suggested I go back to Capelo. I explained that I did not trust Capelo, but had been unsuccessful at getting a new Ortho to take me. Despite my lack of trust in him, I was sent to see Capelo the very next day. He ran many tests, but could not figure out what was wrong with my leg and what was causing the pain. While I was there, I explained to him that I would like to move on to an Ortho that treats adults. He told me he could look around for me and let me know. After speaking to a few other Orthos, he called and explained me to me that no one else could figure it out either. He referred me to a "Trauma Specialist".

Chapter 4 - After a week of being in this same pain, I went to see Dr. Corringe, who turned out to me an "Orthopedic Surgeon". After explaining to him the events that had occurred, he said to me, "I'd like to be completely honest with you. I am a firm believer in the thought that a good, prosthetic leg is better than a bad leg in pain." He told me that we had a few options, but they all seemed to end in amputation. It was so surreal. Was this guy joking? My mother-in-law and I asked him a couple of different times what it was that had caused all of this tightness and pain. Both times he kind of skipped over the question, and referred back to his suggestion of amputation. There were other surgeries that we could do, but there were normally complications, and chances were that they would end up having to cut off the leg anyway. He told me to come back and see him in 10 days, and that if I could not get my heel to stretch down to the floor by then, we would plan amputation.

Chapter 5 - While in my mind, I knew that what this crackpot was telling me was utterly ridiculous and made no sense, he unfortunately put the thought of amputation in my head. It really upset me for a couple of days. I decided to go see my Primary Care Doctor, whom I trust and have known for several years. I told her about my dilemma in not trusting Capelo, about what Collinge told me, and that I was having trouble getting a new Ortho to take me. She gave me the name of an Orthopedic doctor that I will see tomorrow (Friday) morning. Needless to say, I have cancelled my appointment with Collinge, asked them to destroy my records, and have informed them that I will not be coming back. I am excited about a new Ortho and terrified all at the same time. I hope that everything goes well, and will try to be more diligent about blogging more often (if there is anyone out there still checking in).

Ta ta for now!
Melanie

Look out on the road! :)

2007-08-21T07:46:00.000-05:00

Good morning! This is getting to be more of a weekly blog for me now. I try to remember to blog more often, but it never fails - I forget.

So, the wrapping of the foot and leg has been working amazing! My foot and leg are just about to the size of my left ones. Lance has become so much faster at wrapping. The very first time HE had to do it, it took 45 minutes. Now, he's about down to the 15-20 minutes that the lady at the therapy center takes.

I currently am not able to wear the wrap because I have what appears to be a large pressure wound on the top of my foot. When we first removed the wrap Sunday evening, we discovered a mark on the top of my foot towards my ankle that was pink with a purple center, was 1 1/2" in diameter, and that appeared to be some type of insect bite. We iced it for about 15 minutes, thinking that it wouldn't hurt to do so. When we removed the ice, the mark was then red, was about 2" in diameter, and giving off heat. At this point, we also discovered a smaller one on the side of my foot just under my pinkie toe. We decided to leave the wrap off for the night. I called the woman at the therapy center yesterday morning and described what the wound looked like. She advised me to leave the wrap off all day and to look at it this morning. If it wasn't any better, I should call my orthopedic doctor to see what he thinks. She told me that she also thought that it was a pressure wound, but that there was a possibility that it could be an infection concentrated in one area of the foot. My mom kept asking me if it hurt. How do I know? I can't feel my foot or ankle. :) I'll let you all know how that pans out.

Oh! Good news! I'm starting to get some feeling back in my pinkie toe! More good news??? I have learned to drive with my left foot. In order for me to go back to work soon, I will have to be able to drive myself there, so my mom and Lance have been taking me out to practice. It was a bit awkward at first, but I've got it down now! We've tested the narrow country roads with potholes to the freeway. In fact, I'm driving myself to therapy today! Lance says that he is not worried about me driving, but is concerned what would happen if I were stopped by the police or what the insurance company would say if I wrecked. Is there a law out there that says that you HAVE to drive with your right foot? Everything about driving with the left foot is the same as driving with the right foot, really. The only difference is that my right leg is bent with my foot resting on the console. I still face forward, still have both hands on the wheel, etc... What do you think?

Ta ta for now!

Back again....

2007-08-13T23:47:00.000-05:00

Have you ever noticed that things sometimes seem to happen in waves? Sometimes things are up, and sometimes they are down.... Well, things are looking up again, baby!!

When typing the last post, I was feeling a little down because it seems only natural that I would continue to progress as time goes on. When that swelling hits me though, I feel like I regress instead. While I am normally a perky, peppy gal, I have my days when I feel frustrated with myself and my situation, and my mood definitely shows it. Afterwards though, I have to make myself look at things in perspective - I have it SO much better than a huge chunk of the population! Why am I complaining, and really, what do I have to complain about compared to those that have it much worse?

So, I'm back to progressing and inching away from regressing. While it's the farthest thing from "normal-looking" that there is, I have really been trying to focus on pushing my heel to the floor when I walk (which is much more difficult than it sounds) and to walk "normal". While attempting to walk this way can be extremely painful at times, it always fills me with a feeling of exhilaration! I AM WALKING, LADIES AND GENTLEMEN! Watch out - here comes Melanie Dewey walking through the living room! That's right! :) Better yet, while I cannot do it everyday, I have even started to walk more without a walker or a walking boot (only around the house in short distances). Like I said, it looks pretty funky and doesn't look "normal" at all, but, hey, it's some progress! Right?

Also, I am now seeing yet another therapist, but this time for my swelling! Yea! It's just amazing how much better one can walk when they don't have swelling in a lower extremity... So, Lance and I went today to meet her today, and for her to instruct us on a special way of wrapping the foot and leg to reduce the swelling. I wear these special bandages for 22 hour increments, and get to have it off one night a week. My right foot and leg look a little mummy-ish at the moment... First, a gauze leg stocking is put on the foot and leg. Then, a small gauze is wrapped three times around each toe. Foam pieces are then places on either side of the ankle, on top and on the sides of the foot, and then wrapped around the calf. Next, three bandages that are similar, yet more heavy-duty, to an Ace bandage are wrapped starting at the foot, and wrapped all the way up to the underside of my knee. At each half-turn (on either side of my foot and leg), the bandage is pulled tight to encourage the blood to travel back up my leg. Believe it or not, because of the order everything is applied, and because of the specific patterns that the bandages must be wrapped in, this process takes about 15-20 minutes. My diameters of my right foot and leg were measured first at every four inches, and then compared to the diameters of my left foot and leg. I go back in two weeks to be measured again. I wear the gauze/foam/bandage contraption until all swelling is reduced. Once my foot and leg are back to normal size, then they will fit me for a lovely hosiery "garment" to be worn to prevent it from swelling up again. They expect that this will need to be worn until my calf muscle decides to kick back into gear again.

Anyway, all of this is good news, and for now, we are on the UP part of the wave. Thanks to those that are commenting on the blog - the comments are encouraging, and let me know that people are still reading! :) Please say a prayer of thanks to God for sending me Lance. He truly has been my rock. I know that I haven't been the easiest person to be around at times, and he has been so patient with me. From toting me around to my appointments to listening when I feel excited or discouraged to just bringing me ice water when I'm not feeling up to walking up/down the stairs, he has truly been the greatest husband. Whatever I did to deserve God's graciousness, I'll never know - living to survive 5 heart surgeries, being blessed with a PERFECT heartbeat (for the first time, my rhythms on a heart monitor are truly beautiful), supportive family and friends, and a wonderful husband...What more could a girl ask for?

Thankfully yours,
Melanie

Two posts below...

2007-08-07T12:05:00.000-05:00

Attention, attention!

There are two posts below today. One of the posts is my regular update and one is education on compartment syndrome and the fasciotomy. I have had several people ask if there had been a post with information regarding these two things that have left my leg in its current state.

Leg info

2007-08-07T10:11:00.000-05:00

Here is some info on the leg surgery I had (fasciotomy - pronounced as fash-e-OT-oh-me) and the compartment syndrome that caused it.

Fasciotomy

Fasciotomy is a surgical procedure where the fascia is cut to relieve tension or pressure (resulting in loss of circulation to an area of tissue or muscle). Fasciotomy is a limb-saving procedure when used to treat acute compartment syndrome. The procedure has a very high rate of success, with the most common problem being accidental damage to a nearby nerve. Complications can also involve the formation of scar tissue after the operation. A thickening of the surgical scars can result in the loss of mobility of the joint involved. This can usually be corrected through massage therapy or physical therapy.

Compartment syndrome is an acute medical problem following injury or surgery in which increased pressure (usually caused by inflammation) within a confined space (fascial compartment) in the body impairs blood supply, leading to nerve damage and muscle death without prompt treatment.

The heart surgeon and the orthopedic doctor believe that the compartment syndrome in my leg was caused from being on the heart-lung bypass for so long. While I am no doctor, I will try to explain the workings of the heart-lung bypass machine. During an open-heart surgery, the heart-lung bypass machine is used to take over the functions of the heart and lungs. It allows the surgeon to carefully stop the heart while the vital organs continue to receive blood and oxygen. When people are on the heart-lung bypass, very delicate work can be performed by surgeons without interference from bleeding or the heart’s pumping motion. A cut is made into the groin to put a tube into the femoral artery, which will receive blood from the heart-lung machine during much of the operation and circulate it backwards through the body. Because I was on the bypass for approximately 7 hours (normally it's around 3 or 4 hours), the blood stayed so focused in the groin and top part of my leg, and did not allow blood to pump to my foot and lower part of my leg. Apparently, in rare occasions, this lack of oxygenated blood will lead to compartment syndrome. I have been told that when they performed my fasciotomy, they had to remove 40% of the (dead) muscle out of one compartment. I am unsure of what compartment it is that they removed it from though...

Photo of a heart-lung bypass machine

Long time, no type....

2007-08-07T09:44:00.000-05:00

Hello again! Wow! It's been a long time since I've blogged an update! All is well - no worries. The main reason I have not been on in so long is because when I sit with my foot resting on the floor (this is called the most "dependent position" - more on this below), it starts to swell.

This swelling is most frustrating for me because I have more stamina and energy now, so I want to be up doing things. It seems as though whenever I do anything other than sitting with my foot elevated or lying down, my foot and leg swell up. It even got to the point one day last week where I would be lying down with it elevated on three pillows for 2-3 hours. The swelling would go down a bit, which was encouraging. Then, if I got up for even just 5 minutes (like to go to the restroom or something), it would swell right back up again. Arghhhhhh! So, because my foot and leg had been so swollen the therapy session before this day, my physical therapist kindly called to check on me and my foot. I explained to her what was happening. She suggested I call my orthopedic doctor to see what he had to say about the matter. I thanked her, called my doctor, and left a message for his nurse explaining the swelling patterns and the skin tightness I was feeling. The nurse called back less than an hour later and told me that the doctor wanted me to go to the ER as soon as possible.

Off to the ER we went.... By the time we arrived, got into an ER room, removed my walking boot and everything, the swelling has gone down!!! Why is it things seem to have a way of working like that? You have a fever for three days and go to the doctor; when you get there, the fever is gone! Ugh! So anyway, of course, when the ER doctor came to assess me, it was not huge anymore. He did check it for infection, and could find none. He also didn't seem to think that I had developed compartment syndrome again, which is great. So, we were sent back home with "sometimes it's going to swell more than others, and you just have to keep it elevated when it swells". Oh well.

So, about the "dependent position" thing.... According to my physical therapist, your calf muscle pumps the blood that circulates to your legs back up to your heart. Apparently, since my fasciotomy, the calf muscle in my right leg is not functioning properly. As a result, when the blood circulates down to my leg, it sometimes stays there when my leg is in a sitting or "dependent position". When I am walking, the calf muscle works properly and when I sit or lay with my foot elevated above my heart, the blood will begin to circulate properly again. Ironically, while walking will usually keep it from swelling, once it has swelled, it is difficult and painful to walk on. Who knew? See, you really do learn something new everyday.

Sooooo, because of the continued swelling of my leg, I've been doing a lot of reading! I'm a big Harry Potter fan, so before I read the newest book (book 7), I have gone back and started with book 1 again. I have now started on book 6, so I'm just almost there!

When the swelling is down, I have been trying to walk on it more. My friend, Willie, has now experienced a foot/leg injury as well. He has Posterior Tibial Tendinitis, and is also in a walking boot right now. Because he can't drive right now either, Lance and I picked him up yesterday and went out to lunch. We were quite a sight - two people in walking boots! Poor Lance - chauffeur of the temporarily handicapped!

Big News!

2007-07-24T22:13:00.000-05:00

Hello all! I apologize for the delay in blogging again. I was very sick to my stomach all weekend.

BIG NEWS - the dialysis catheter is OUT! Lance and I went to a surgeon's office Friday afternoon. He snipped three stitches, gave a little tug, and then kept pulling and pulling. I couldn't believe that all of that came out of my body - and to watch it coming out of my chest was just weird. The initial tug hurt just a very little bit, and then it was smooth sailing after that....

Not much else to tell right now. The weekend was pretty blah since I was sick all weekend. I will hopefully have more interesting things to say in my next post.

Ta ta for now!

Busy Week!

2007-07-19T23:49:00.000-05:00

Just a warning - this may be a long one since I haven't blogged since Monday! :)Let's see! Well, I started occupational therapy (upper body) on top of my physical therapy this week. Boy, was I tired after Tuesday! In Occ. Therapy, that woman had me lay on this thing that resembled Styrofoam. It was cylinder-shaped, and was about 6 inches in diameter, but cut in half. Does that make sense? So, anyway, I was to lay on it and balance my spine - that was all fine and good. Then, she had me raise one knee and wanted me to touch the opposite hand to that knee! You can guess the rest of it - lower it, then switch and do the other side. She said I did well, but I felt like I was rolling all over the place. She originally brought out one exactly like it, but one that had NOT been cut in half (so there was NO flat edge for the mat). Lance's eyes and my eyes must have shot out of our heads a little because then she laughed and told us that I I could try something simpler. Ha ha! Anyway, it wasn't too bad, but that was one thing I had never done before. I hope I explained all of that okay! In physical therapy, I got to use the exercise bike for 5 minutes! I think I burned 12 calories or something - go me! :) It seems like the more my foot and leg are moved around and stretched, the tighter they get. Lance and I are really going to have to buckle down and be better about stretching me every day (I can't stretch myself because I can't get the right resistance).

Enough about therapy - but I go again Friday (I'm typing this at midnight, so I'm not sure how to reference), so you'll probably get a new update during my next entry! My friend, Kara, came over again Wednesday to stay with me so that Lance could run some errands and take some time off. I think that's so important when you are caring for someone 24/7. He needs some time to himself to do whatever he wants to do. So, he did his thing, and Kara took care of me! She rubbed my feet again with body butter, and painted my toenails (they look so pretty)! We had fun!

Yesterday (Thursday), Lance and I spent 5 hours at the clinics at the hospital for doctors' visits. I saw the neurologist (for my nerve pain in my leg and foot). He seemed very encouraged. The last time he saw me in the hospital, I didn't have much feeling in my leg. Now I do, and I just don't have much or any feeling from about my ankle, down. He told us that nerves generally reconnect about a millimeter a day, which isn't much. But, because I got the feeling in my leg back so quickly, he told us that he feels encouraged that the feeling in my foot and toes will come back - we just don't know how long it will take.

We also saw the nephrologist (kidney doctor), and he's what took so long. We received some disappointing news, but also some very good news. We were hoping that I would be able to have my dialysis catheter in my chest taken out today, and it didn't happen. We were kind of led to believe that that was the purpose of today's visit, but it wasn't, I guess. No one bothered to tell us that a surgeon has to remove the dialysis catheter - not my kidney doctor. Bummer. BUT, the good news is that it CAN (I repeat, CAN) come out! It is time!!!!! Isn't that super news? I will call the surgeon on Friday (Is that today? tomorrow?), and schedule some time. Boy howdy, if they can get me in when I call, I'm THERE!!!! :) The kidney doctor told us that, with children, they receive anesthesia for the procedure. He said that adults would probably receive a local anesthetic at the site, and then they can remove it! Apparently, the catheter starts at about the level of my heart (but on my right side), goes up into my neck, and then comes back down. I'm sure it will hurt, but I know that I will be able to handle it. I may need a leather strap or something to bite down on...

Well, I better get off to bed. I'll try to blog again on Friday to let you all know what I find out! Hope all is well with all of you!

Most Exciting!

2007-07-16T18:37:00.000-05:00

Hello all! Yesterday I went to church, and it was a Communion Sunday. We arrived to church with me in my wheelchair. Before church started, I saw our friend, Jane, who had not seen me since I was in a room at the hospital. I stood up out of my wheelchair and walked to her to give her a hug. When we finished with the hug, she had tears in her eyes. I thought I was going to cry too! :) She was so happy. During church, I sat in the pew like I normally would, and Lance tucked the wheelchair out of sight. We sat in "our spot" towards the back by the organ. I leaned over to Mom and told her that I felt that I could walk down to Communion with Lance's help (I had my walking boot on). She looked a little nervous, but was supportive of what I felt I could do. Time went on, and soon it was time for Communion. The three of us stood up, with Lance holding my hand. Sure enough, I walked all the way down to the Communion rail, kneeled for Communion, and then walked all the way back. For those of you who have never been to Peace, we have a rather large sanctuary. It was quite a trip for someone who has not been walking long distances - especially without a walker. Fortunately, when I have a strong, loving husband by my side, a protective, supportive mother in front of me, and God watching over me, I knew that I would be able to do it with no problems. Besides....we always had the wheelchair as a back-up! ;)

I definitely took a nap when we came home! I feel great when I do things like that, but they wear me out. I think I slept 10 hours last night. The night before, I slept 12 hours.

Today, Lance had to get some hail damage on his car appraised at the insurance company, so his mom and grandmother came over to stay with me for a few hours. We had a good time just sitting in the den, talking about various topics. I guess they were here for about 3 hours, and then Lance came home. I put on my walking boot, and walked them down the stairs so that I could say goodbye to them downstairs. After they left, I had some lunch and then took a 2 hour nap! Nothing exciting has happened since then. I'll say ta-ta for now, and will blog again tomorrow!

Thanks again for all of your love and support!
Love,
Melanie

Out and About More and More

2007-07-15T09:57:00.000-05:00

I'm about to head off to church, but wanted to get in a quick entry. Yesterday my mom, my friend Kara, and I went to see the new Harry Potter movie. We decided to not take my wheelchair because we were afraid that we would have to sit at the bottom of the theater, and we're more top of the theater gals. I got brave and just took my walker. If I hadn't had the surgery on my leg, and was walking normally, the theater would have been right by the ticket stand. Ironically, it was "to the right, and all the way in the corner". I did a lot of walking. Then, I was planning on walking up all those steps (have to sit at the top, you know), but then Mom found an elevator! Praise the Lord! Hmmm...the things you don't notice when you're not temporarily handicapped! Anyway, we had a good time at the movie. I had planned on coming home and taking a nap because between all of the walking and the stimulus of the movie, I was exhausted! By the time we took Kara home, and then Mom took me home, it was like 7:00pm. - too late for a nap. I plan on taking one today - that's for sure.

Well, I better get going! I'll blog again soon!

It's me again! :)

2007-07-14T11:58:00.000-05:00

I slept 12 hours last night, and boy did I need it! I'm pretty sure I overdid it yesterday, but I felt so good about everything I was doing at the time, that I guess I wasn't thinking about how I would feel at the end of the day. I can now walk for quite a bit with just my walking boot on and no walker. As a matter of fact, Lance and I have been leaving the wheelchair out in the car the last couple of days because I've been walking into the house from the car. Granted, because the driveway and sidewalk have a slight incline, Lance has to hold my hand, but I am still walking without a walker. Let me tell you - it feels GREAT! Every now and then, I can run my bare toes of my right foot across the carpet, and I can feel the carpet. It doesn't happen every time, but it's a wonderful sensation when it does happen. It seems like the more my foot is touched, the more it stimulates it, and the more I can feel. The things I feel aren't always pleasant, but the way I look at it, any feeling is better than no feeling.

So, yesterday morning Lance and I went to an appointment with my Orthopedic doctor. He thinks that the incisions on my leg are healing well. I surprised him by walking to the examining table with no assistance. He told me that everything was looking good, and that he wanted to see me again in 6 weeks. His estimated time for me to go back to work is also 6 weeks, but he mentioned that if I felt like I was getting around well enough to go back to work after 4 weeks, to call his office and he would get me in sooner.

After our appointment, Lance and I went up to Office Depot to visit with the people I work with and to let them see that I am okay. After that, we went out to lunch with a couple of my co-workers, and had a good time. After being in and out of the car so much (that takes a lot of energy for me), we went home and took a nap! I slept for about 2 hours and then it was time for physical therapy. Back to the car again.....

At therapy, it seemed only fitting that I perform for Joanna (my physical therapist) as well. I stood up out of my wheelchair and walked over to the mat. She was so excited! That girl worked me yesterday! She told me that I would probably be a little sore - she was right. She then showed us some leg exercises that I am supposed to do at home and some stretches that Lance is supposed to help me with. Once my incisions totally heal, we will do some exercises in the pool! I also found out that I will start occupational therapy next week (focuses on more of the upper body).

Finally, we headed home. Our friend, Vicky, had planned on coming over to bring us some breakfast items. I got to surprise her as well because I answered the door to let her in! :) She had not been to our house yet, so I was able to give her a tour of our house - first the downstairs and then the upstairs. After the tour, I was exhausted and pretty much stayed in my recliner until it was time for me to go to bed.

There was a time that doing all of this in one day was nothing for me. Now, things are more challenging, but I'm finding that some things become easier every day. I continue to push myself to achieve daily goals, and I have an awesome support system and cheer leading team! :) I can't say enough how lucky and blessed I am!

Until next time, all my love....
Melanie

This is Melanie again

2007-07-12T22:07:00.000-05:00

Hello again! I won't make today's entry as long as yesterday's - I promise! I'm feeling so good! I'm able to wash my own hair now. This may not seem like a big deal to most people, but when you take into consideration that a couple of weeks ago I couldn't find my nose, it's a huge leap! :) I'm also dressing myself with little to no help. I'm such an independent person that when I am able to do even these "small" things by myself, it feels good and increases my confidence. Life is good!

My friend, Kara, came over today to spend some time with me. It worked out well because Lance was able to get away for a bit to get his hair cut (and boy did he need it), and Kara and I were able to do girly things! She rubbed lotion on my foot for about 30 minutes to try to stimulate it - it worked! I could actually start to FEEL the existance of my foot. Only a TRUE friend would rub my feet. I'm a lucky, lucky lady.

I have such an amazing husband. He has been a sweet, caring nurse and has waited on me hand and foot. I love him so very much and thank God every day for bringing him into my life. Marrying Lance Dewey was the best thing I have EVER done. I love you, Honey. You are, and always will be, the love of my life.

I dedicate the blog to my bride

2007-07-12T00:46:00.001-05:00

This is Melanie - Wed July 11

2007-07-11T23:43:00.000-05:00

Hello everyone! This is Melanie and I AM HOME!!!!!! :) Lance thought it would be nice if I posted an update from my perspective on the blog.

I'm much more mobile now. When we first came home from the hospital, the getting up and down the stairs was very challenging for me. Today, I was much faster (with Lance's help), and I was able to walk UP the stairs by myself. I shocked myself that I was able to do that! :) I still can't wiggle my toes on my right foot or flex my foot. I tell my toes to wiggle, but they aren't listening just yet.

I also had another first today. We met with my surgeon so that I could give him a hug and thank him (is "thank you" enough for saving some one's life?). When he saw me sitting in the wheelchair, he touched my shoulder, and I stood up to hug him. He was standing a few steps away from my wheelchair, but I felt so inspired that I walked about 4 steps with no assistance to him (I can only do this with my walking boot). He looked pretty shocked, as did Lance! It felt good that my first steps were to the man that spent 15 long hours operating on me. We sat with him for about half an hour while he explained what happened in the operating room, about my leg and kidneys, etc. He then gave us his email address and asked that we email him updates on my progress. I was also asked to be part of a parent/patient panel for a conference in September about Congenital Heart Diseases. I felt very honored that I was asked to be a part of that. Apparently, the panel used to be made up of just parents. Because patients with Congenital Heart Defects are actually living longer, they decided to ask a 24-year-old person and me to take part in it also. Wow! What an honor!

I want to thank you all for thinking of me, for praying for me, for the blood donations, for the cards and the visits. I truly appreciate everything. I feel so blessed to be alive. While I get frustrated at times, I try to accomplish something different everyday. I know that God was with me throughout all of this, and that it has all happened for a reason.

I have learned that people look at handicapped people differently. Some people avoid eye contact. Those are the people I chirp a friendly "hello" to. I've learned that the bar in the handicapped stall really does come in handy. While I am only temporarily handicapped, I have a whole new respect for the handicapped community.

Huh. I'm rambling. Lance would like me to kind of take over the blog and let everyone know the day-to-day progress I make. I'll do my best. I really will go now. Thank you all again!

All my love and appreciation,
Melanie

Friday July 6

2007-07-06T19:34:00.001-05:00

Melanie is HOME!

we think she had her last hemodialysis today, but have to go in monday morning for bloodwork and may have to continue it temporarily

she has about 4 doctors appointments in the next couple of weeks and physical therapy until they release her...

TONIGHT she sleeps in HER OWN BED!!!!!!!!!!!!!!!!!

INDEPENDENCE DAY 2007

2007-07-04T22:07:00.000-05:00

rumor has it that melanie only has a "few" more trips to the dialysis and that we will do the last ones as outpatient...

let me fill you in, in case you didn't pick up on that.....

Melanie's kidneys "seem" to be returning in their function
Melanie could be home as early as friday

Monday July 2

2007-07-03T00:10:00.000-05:00

We went to the dialysis clinic today for her hemodialysis
it is much nicer going down there then having them come up to ICU...much shorter

Melanie's leg is really hurting her and we hope to have a neurologist look at it
I think there is some nerve damage

Being in a regular room is nice, but Melanie can't wait to be home....that makes all of us!

Sunday July 1

2007-07-02T00:15:00.000-05:00

Melanie is doing well!
I am excited to inform y'all that she is in a "regular room" and out of the ICU...where she hasn't needed to be for the past 4 or 5 days...according to me anyway

She is in room P313 (a regular room)
Cooks Children's Medical Center
801 Seventh Avenue
Fort Worth, Texas 76104
682-885-7313

visitation hours are until 9PM I think

feel free to call before you visit so we can make sure our schedule is okay...
for now it looks like physical therapy twice a day like 10AM and 2PM or so...but that changes
and dialysis every other day starting monday usually has been in the later afternoon...but that changes

Hemodialysis tomorrow
no news of when she will be allowed to return home, probably not before the end of the week, but let's keep our hopes up.
I suspect after they get the dialysis scheduling worked out and she gets a little more physical therapy she'll get to go home

Notice below I have attached lots of information about what Melanie's surgery was all about...and about her leg

Ventricular Septal Defect

2007-07-02T00:13:00.001-05:00

What Is Ventricular Septal Defect?

Ventricular (ven-TRICK-u-lar) septal defect (VSD) is a hole (defect) in the wall that separates the lower chambers of the heart. The lower chambers of the heart are called the ventricles (VEN-trih-kuls). The wall between them is called the ventricular septum. In the normal heart, the septum prevents blood from flowing directly from one ventricle to the other. In a heart with a VSD, blood can flow directly between the two ventricles.

The How the Heart Works section in this article explains the normal heart and blood flow in detail.

VSD is a congenital heart defect, which means that it is present at birth. In children with a VSD, blood usually flows through the defect from the left ventricle to the right ventricle. This causes extra blood (called volume overload) in the pulmonary (PULL-mun-ary) arteries and lungs, and in the left atrium and left ventricle.

Figure A shows the normal anatomy and blood flow of the interior of the heart. Figure B shows two common locations of ventricular septal defects. The defect allows oxygen-rich blood from the left ventricle to mix with oxygen-poor blood in the right ventricle.

Effects of VSD

Over time, a VSD that does not close—especially a large VSD—can cause:

Congestive heart failure. Infants with large VSDs may develop congestive heart failure. Extra blood flows from the left ventricle through the right ventricle to the lungs and back to the left atrium and on to the left ventricle. This causes the left atrium and left ventricle to handle an increased amount of blood, and the workload on the heart increases. The increased workload on the heart also increases the heart rate and the body's demand for energy. The extra blood flow in the lungs may cause rapid breathing, while also increasing the body's demand for energy.
Growth failure, especially in infancy. Your baby may not be able to eat enough to keep up with his or her body's increased energy demands. Your baby may lose weight or fail to grow and develop as he or she should.
Bacterial endocarditis is an infection of the lining of the heart, valves, or arteries. Endocarditis often occurs following dental and medical procedures.
Irregular heartbeat or rhythm (arrhythmia). The extra blood flowing into the left atrium can cause the atrium to stretch and enlarge. When this occurs, your child can develop a fast heartbeat with symptoms such as dizziness or fainting.
Pulmonary artery hypertension (high blood pressure in the pulmonary arteries). If a moderate or large VSD is not closed, sustained blood flow under higher pressure into the pulmonary arteries causes the arteries to become thickened and stiff. The amount of blood flow to the lungs decreases over time as the resistance to blood flow into the pulmonary arteries increases. However, this causes the right ventricle to work harder. Today, pulmonary artery hypertension rarely develops because most large or moderate VSDs are closed in infancy or early childhood.

Characteristics of VSD

VSD is the most common type of congenital heart defect. Infants born with a VSD may have a single hole or more than one hole in the wall that separates the two ventricles. The defect may also occur by itself or with other congenital heart defects.

Types of VSD

Doctors classify VSDs based on the:

Size of the defect.
Location of the defect.
Number of defects.
Presence or absence of a ventricular septal aneurysm—a thin flap of tissue on the septum. It is harmless and can help a VSD close on its own.

VSDs range in size from small to large.

Small VSDs usually allow only a small amount of blood flow between the ventricles. Because of this, they are sometimes called restrictive. Most small VSDs:
- Do not cause symptoms in infants and children
- Close on their own, often by school age
- Rarely need surgery or other procedures to close the defect
Moderate (or medium-sized) VSDs are less likely than small defects to close on their own. They may require surgery to close and may cause symptoms during infancy and childhood.
Large VSDs allow a large amount of blood to flow from the left ventricle to the right ventricle and are sometimes called nonrestrictive. A large VSD is less likely to close completely on its own, but it may get smaller. A large VSD can cause more symptoms in infants and children, and surgery is usually needed to close it.

VSDs are found in different parts of the septum.

Membranous VSDs are located near the heart valves. They can close at any time if a ventricular septal aneurysm is present.
Muscular VSDs are found in the lower part of the septum. They are surrounded by muscle, and most close on their own during early childhood.
Inlet VSDs are located close to where blood enters the heart. They are less common than membranous and muscular VSDs.
Outlet VSDs are found in the part of the ventricle where the blood leaves the heart. This is the rarest type of VSD.

Outlook

Most VSDs close on their own or are so small that they don't need treatment. Some children and adults need surgery or other procedures to close the VSD, especially if it is large. Most children and adults live long and productive lives after their VSD closes or is repaired.

Pulmonary Stenosis

2007-07-02T00:12:00.001-05:00

Pulmonary Stenosis

What is pulmonary stenosis?

Pulmonary stenosis is a congenital (present at birth) defect that occurs due to abnormal development of the fetal heart during the first 8 weeks of pregnancy.

The pulmonary valve is found between the right ventricle and the pulmonary artery. It has three leaflets that function like a one-way door, allowing blood to flow forward into the pulmonary artery, but not backward into the right ventricle.

With pulmonary stenosis, problems with the pulmonary valve make it harder for the leaflets to open and permit blood to flow forward from the right ventricle to the lungs. In children, these problems can include:

a valve that only has one or two leaflets instead of three.
a valve that has leaflets that are partially fused together.
a valve that has thick leaflets that do not open all the way.

Pulmonary stenosis may be present in varying degrees, classified according to how much obstruction to blood flow is present. A child with severe pulmonary stenosis could be quite ill, with major symptoms noted early in life. A child with mild pulmonary stenosis may have few or no symptoms, or perhaps none until later in adulthood. A moderate or severe degree of obstruction can become worse with time.

Pulmonary stenosis is a component of half of all complex congenital heart defects.

Pulmonary stenosis is the second most common congenital heart defect, comprising 5 to 10 percent of all cases.

What causes pulmonary stenosis?

Congenital pulmonary stenosis occurs due to improper development of the pulmonary valve in the first 8 weeks of fetal growth. It can be caused by a number of factors, though most of the time this heart defect occurs sporadically (by chance), with no clear reason evident for its development.

Some congenital heart defects may have a genetic link, either occurring due to a defect in a gene, a chromosome abnormality, or environmental exposure, causing heart problems to occur more often in certain families.

Why is pulmonary stenosis a concern?

Mild pulmonary stenosis may not cause any symptoms. Problems can occur when pulmonary stenosis is moderate to severe, including the following:

The right ventricle has to work harder to try to move blood through the tight pulmonary valve. Eventually, the right ventricle is no longer able to handle the extra workload, and it fails to pump forward efficiently. Pressure builds up in the right atrium, and then in the veins bringing blood back to the right side of the heart. Fluid retention and swelling may occur.
There is a higher than average chance of developing an infection in the lining of the heart known as bacterial endocarditis.

What are the symptoms of pulmonary stenosis?

The following are the most common symptoms of pulmonary stenosis. However, each child may experience symptoms differently. Symptoms may include:

heavy or rapid breathing
shortness of breath
fatigue
rapid heart rate
swelling in the feet, ankles, face, eyelids, and/or abdomen
fewer wet diapers or trips to the bathroom

The symptoms of pulmonary stenosis may resemble other medical conditions or heart problems. Always consult your child's physician for a diagnosis.

How is pulmonary stenosis diagnosed?

Your child's physician may have heard a heart murmur during a physical examination, and referred your child to a pediatric cardiologist for a diagnosis. A heart murmur is simply a noise caused by the turbulence of blood flowing through the obstruction from the right ventricle to the pulmonary artery. Symptoms your child exhibits will also help with the diagnosis.

A pediatric cardiologist specializes in the diagnosis and medical management of congenital heart defects, as well as heart problems that may develop later in childhood. The cardiologist will perform a physical examination, listening to the heart and lungs, and make other observations that help in the diagnosis. The location within the chest that the murmur is heard best, as well as the loudness and quality of the murmur (harsh, blowing, etc.) will give the cardiologist an initial idea of which heart problem your child may have.

However, other tests are needed to help with the diagnosis, and may include the following:

chest x-ray - a diagnostic test which uses invisible electromagnetic energy beams to produce images of internal tissues, bones, and organs onto film.
electrocardiogram (ECG or EKG) - a test that records the electrical activity of the heart, shows abnormal rhythms (arrhythmias or dysrhythmias), and detects heart muscle stress.
echocardiogram (echo) - a procedure that evaluates the structure and function of the heart by using sound waves recorded on an electronic sensor that produce a moving picture of the heart and heart valves.
cardiac catheterization - a cardiac catheterization is an invasive procedure that gives very detailed information about the structures inside the heart. Under sedation, a small, thin, flexible tube (catheter) is inserted into a blood vessel in the groin, and guided to the inside of the heart. Blood pressure and oxygen measurements are taken in the four chambers of the heart, as well as the pulmonary artery and aorta. Contrast dye is also injected to more clearly visualize the structures inside the heart.

Treatment for pulmonary stenosis:

Specific treatment for pulmonary stenosis will be determined by your child's physician based on:

your child's age, overall health, and medical history
extent of the condition
your child's tolerance for specific medications, procedures, or therapies
expectations for the course of the condition
your opinion or preference

Mild pulmonary stenosis often does not require treatment. Moderate or severe stenosis is treated with repair of the obstructed valve. Several options are currently available.

Some infants will be very sick, require care in the intensive care unit (ICU) prior to the procedure, and could possibly even need emergency repair of the pulmonary valve if the stenosis is severe. Others, who are exhibiting few symptoms, will have the repair scheduled on a less urgent basis.

Children who do not require immediate repair in infancy may need to receive antibiotics to prevent an infection of the inner surfaces of the heart known as bacterial endocarditis prior to procedures such as a routine dental check-up and teeth cleaning. Other procedures may also increase the risk of the heart infection occurring. It is important that you inform all medical personnel that your child has pulmonary stenosis so they may determine if the antibiotics are necessary prior to the procedure.

Repair options include the following:

balloon dilation or valvuloplasty - in a cardiac catheterization procedure, a small, flexible tube (catheter) is inserted into a blood vessel in the groin, and guided to the inside of the heart. The tube has a deflated balloon in the tip. When the tube is placed in the narrowed valve, the balloon is inflated to stretch the area open.
valvotomy - surgical release of adhesions that are preventing the valve leaflets from opening properly.

Postoperative care for your child:

After surgery, your child will go to the intensive care unit (ICU). While your child is in the ICU, special equipment will be used to help him/her recover from surgery, and may include the following:

ventilator - a machine that helps your child breathe while he/she is under anesthesia during the operation. A small, plastic tube is guided into the windpipe and attached to the ventilator, which breathes for your child while he/she is too sleepy to breathe effectively on his/her own. Many children remain on the ventilator for a while after surgery so they can rest.
intravenous (IV) catheters - small, plastic tubes inserted through the skin into blood vessels to provide IV fluids and important medicines that help your child recover from the operation.
arterial line - a specialized IV placed in the wrist, or other area of the body where a pulse can be felt, that measures blood pressure continuously during surgery and while your child is in the ICU.
nasogastric (NG) tube - a small, flexible tube that keeps the stomach drained of acid and gas bubbles that may build up during surgery.
urinary catheter - a small, flexible tube that allows urine to drain out of the bladder and accurately measures how much urine the body makes, which helps determine how well the heart is functioning. After surgery, the heart will be a little weaker than it was before, and, therefore, the body may start to hold onto fluid, causing swelling and puffiness. Diuretics may be given to help the kidneys to remove excess fluid from the body.
chest tube - a drainage tube may be inserted to keep the chest free of blood that would otherwise accumulate after the incision is closed. Bleeding may occur for several hours, or even a few days after surgery.
heart monitor - a machine that constantly displays a picture of your child's heart rhythm, and monitors heart rate, arterial blood pressure, and other values.

Your child may need other equipment not mentioned here to provide support while in the ICU, or afterwards. The hospital staff will explain all of the necessary equipment to you.

Your child will be kept as comfortable as possible with several different medications; some which relieve pain, and some which relieve anxiety. The staff will also be asking for your input as to how best to soothe and comfort your child.

After discharged from the ICU, your child will recuperate on another hospital unit for a few days before going home. You will learn how to care for your child at home before your child is discharged. Your child may need to take medications for a while, and these will be explained to you. The staff will give you instructions regarding medications, activity limitations, and follow-up appointments before your child is discharged.

Long-term outlook after pulmonary stenosis surgical repair:

Most children who have had a pulmonary stenosis surgical repair will live healthy lives. Activity levels, appetite, and growth should eventually return to normal. Infants who had a difficult post-operative course may be less healthy than infants who did not experience complications.

Your child's cardiologist may recommend that antibiotics be given to prevent bacterial endocarditis after discharge from the hospital.

Consult your child's physician regarding the specific outlook for your child.

Transpostion of the Great Arteries

2007-07-02T00:07:00.001-05:00

In the normal heart, the right side of the heart pumps ‘blue’ blood (un-oxygenated) from the body to the lungs through the pulmonary artery (main artery to the lungs), while the left heart pumps “red” blood (oxygenated) from the lungs to the body through the aorta (main artery to the body).

In this defect, the position of the main vessels to the lungs and body is reversed so that the aorta arises from the right side of the heart and the pulmonary artery form the left side of the heart. The consequences of this reversal are severe, since blood which has gone to the lungs to pick up oxygen is not pumped to the body as it should be, but instead returns to the lungs. The only way blood with oxygen can reach the body is by passing through a hole between the upper collecting chambers and mixing with the “blue” blood.

The surgeons perform an arterial switch procedure for this anomaly, which connects the aorta to the left ventricle and connects the pulmonary artery to the right ventricle.

Rastelli Procedure - Melanie's first surgery

2007-07-01T23:55:00.000-05:00

Melanie's first surgery was called the Rastelli procedure...the rest are considered "updates"

In 1969, Rastelli conceived a new technique to repair of transposition of the great arteries in the presence of ventricular septal defect and severe pulmonary stenosis (TGA III), based on the redirection of ventricular outflows. An intracardiac tunnel connected the left ventricle to the aorta and an external valved conduit established continuity between the right ventricle and the pulmonary artery. TGA III and truncus arteriosus are underwent a Rastelli operation. Early deaths were related to unfavourable anatomy, conduit compression and sepsis. Residual VSD and postoperative infection were the main factors contributing to the late deaths. A current Re-Rastelli operation for the problems of extracardiac valved conduit is a good result.

What was wrong with Melanie's leg and how they fixed it

2007-07-01T23:38:00.001-05:00

Saturday 6-30

2007-06-30T22:19:00.000-05:00

I spent the night last night at the hospital and Melanie and I watched Grease
She did physical therapy and walked about 40 steps with a walker today.
She is getting stronger everyday and we expect to be in room on monday, of course, we know how hospital timetables work

the hemodialysis continues, but she has been producing small amounts of urine.
one of the doctors said that this could be "kidney sweat", but I have no clue what that means..I have an idea of what he meant, but she seems to produce about 10-20 mL of urine everytime she tries and that is at least 2-3 times a day.

I'm sure she is happy that I am talking about her urinary health...but I promised myself I would keep you informed as best I could

Thursday 6-28

2007-06-29T01:33:00.000-05:00

Melanie was sitting in a chair for about 4 hours
two physical therapy sessions
one 3 hour hemodyalysis session
Her friend, Willie, played the piano for a special concert for her tonight...he brought a smile to our faces, especially hers!
she is tired to say the least...

rumors abound about her moving to the 3rd floor by the end of the weekend...hope they come to pass

thanks for all the comments...you guys are great out there!
we have recieved a lot of get well cards and I can't begin to tell you how much it means to us!

melanie can't wait to be home and is working hard at recovering

I HAVE ADDED SOME NOTES

2007-06-27T23:19:00.000-05:00

Scroll down to the beginning of the blog and you will find details of the first days of the post op
I talked to several people during those days and would love for them to add comments as to what was going on then.

I think psychologically, I have blacked out some things.

In the future, I will let Melanie see all these blog entries...she knows it exists but for right now I am saving her some of the detail...

Pray for kidney function....the doctors say they could recover tomorrow or 2 months from now....

Wed 6-27 11PM

2007-06-27T22:58:00.000-05:00

Melanie underwent 2 hours of hemodialysis today and handled it well
tomorrow she'll do another round and maybe one more friday.

If she handles this dialysis well, we hope to have her in a "regular room" on the 3rd floor by the weekend.

She was tired today after working so hard the previous two days...no physical therapy

I suspect she will be up and about tomorrow

Irony in the ICU : Tues June 26 8PM

2007-06-26T19:53:00.000-05:00

Well, I found out today that Melanie would have been out of ICU by now except there is a logistical problem.
A Catch 22 if you will.

The ICU hemodialysis machine they want to put her on is broken down or something.
The doctor won't let her go to a regular room until they are sure she can handle the hemodialysis which is the short term but more difficult on your body .

What Melanie is on now is known as CVVH (Continous V? V? Hemodialysis, I think), which is continuous and easier on the body.

They will check her out of ICU if she can handle "regular" hemodialysis.
The portable "regular" hemodialysis machine is broken
The dialysis clinic won't accept an ICU patient, so she can't go down there to get hemodialysis
She's an ICU patient only because the nurses in the regular rooms don't do dialysis and the cardiac doctors won't let her go to the regular room unless they think she can handle "regular" hemodialysis

In short, the CATCH 22 is...

The dialysis clinic won't accept her until she moves out of ICU
They won't move her out of ICU until she can handle hemodialysis.

MORAL of the STORY

MAY GOD GRANT HER FULL KIDNEY FUNCTION ASAP.

she is fine elsewise....talking and sitting up and physical therapy twice a day

Mon 6-25-07 5PM

2007-06-25T17:07:00.000-05:00

It was a good morning
we got Melanie up in the cardiac chair
she got some physical therapy and occupational therapy
she got to go on a stroll in her chair with us around the hospital a little bit and out front with all the pretty greenery

She is speaking in full sentences and making sense. we have been sort of making sure she is oriented by telling her what day it is and that she had the surgery and that it has been a long recovery. She has been a little upset by it, but mainly it just motivates her to recover faster.

She wants to touch her nose, but her arms couldn't get up there. At least, that was this morning...I bet when I get back up there later today she will be scratching her own nose, just cause the PT said it might take a while to gain her strength.

She has a good grasp of what's going on when her kidney toxins are not elevated...they are going to give her dialysis at night and work with her during the day.

I want to share something special she told me today.

"I am alive! I am in love! I am alive because I am in love"

I cried, not for the first time on this journey, but for the first time with JOY.

My wife is coming back to me slowly but surely....you all have been a big part of ths. To know that you are out there reading this blog and thinking about us and praying for us sometimes has been what I needed to get through the night.

I am so sorry that my updates are not coming as fast as they used to....it's just that she is doing so well, I can hardly keep up

Sunday June 24 10:15PM

2007-06-24T22:14:00.000-05:00

Melanie is doing well
gaining strength and we are trying to get her towards a regular diet
Most of what she has had is liquid calorie drink...a formula type thing
she's getting tired of that and definitely grumpy at me for trying to give it to her

all in all she is getting better, still on dialysis though
they are rebandaging her leg tomorrow morning

Saturday June 23 9:52PM

2007-06-23T21:52:00.001-05:00

Melanie spent most of the day sleeping
well deserved sleep I might add
She was awake earlier and we gave her a bath
she is doing well
feeding tube was taken out earlier because she is drinking and eating on her own

We are giving her tylenol and another non narcotic for pain, but she seems to feel all right

sleep easy, she is

Thursday 6-22-07 5:30PM

2007-06-22T17:37:00.000-05:00

Melanie has been awake periodically through the day
She makes sense when she talks pretty much all the time now
We are having her drink as much as the nurse will let us
she has had a fruit cup and probably will have some grapes later along with anything else we can get her to eat

She has been up in the cardiac chair twice, a good thing according to the Physical therapist

She looks and sounds good

Thursday 6-21-07 8:20PM

2007-06-21T20:22:00.000-05:00

I am home for the night
I expect tomorrow to be a busy day helping Melanie
Forgot to say that the CT scan on her brain this morning was fine...I knew it anyway

She has been jabbering about wanting ice water...we are working towards that
she has also been wanting to get up out of the bed and go....that's gonna take some time

She's loopy from the drugs and is taking methadone, which she is being weened off from
She's making sense most of the time and I am glad to have her tell me she loves me

I can't wait for tomorrow, it should be a great day

Thurs 6-21-07 3PM

2007-06-21T14:59:00.000-05:00

still awake
still talkin
lookin for kidney function

we have given her some special dietary kidney drinks to hopefully help....she says they taste like ice cream

Thursday 6-21-07 11:30AM

2007-06-21T11:34:00.000-05:00

one popsicle down
several more to go
she should be on liquids by the end of the day hopefully

I'm keeping her coughing and breathing deep

she's in a cardiac chair to keep her upper body more elevated

Thursday 6-21-07 9:30AM

2007-06-21T09:34:00.000-05:00

Melanie is awake
without an oxygen mask, just the nose tube thing

The respiratory therapist was working with her earlier and she was responding well
She has been talking with me and she makes more and more sense as time goes by

I just asked her if she was tired...no
I asked her if she wanted to cough ... no
I asked her what was up with the face she was making...she said that I was "ticking her off"

no doubt because I had spent the last 10-15 minutes telling her to breathe deep and cough, which is no doubt painful

Wednesday 6-20-07 11:40PM

2007-06-20T23:37:00.000-05:00

I' m home for a decent sleep
Patti called and said that the breathing tube was removed!
We didn't anticipate that one

She has an oxygen mask, but not the tube!
We are progressing.

CT scan tomorrow on her brain....the doctors need to see what I all ready know...she has a working brain....but you know those doctors, they need proof

thanks for the comments and thoughts and prayers

My strength is reinforced by the strength of my family and friends...thank you

Wednesday Afternoon 6-20-07

2007-06-20T13:49:00.000-05:00

All is fine
Melanie is still asleep but intermittently wakes up and lifts both her arms up reaching for the breathing tube

Erez says that since she can move both arms, that is a good indicator of good brain function. usually concern if only one side moves. CT scan tomorrow or friday. I have no fear, her brain is fine according to me....but they still need to check it and won't fully know until she wakes up.

They are going to start hemodialysis...the kind that is not continuous...to filter her blood and not necessarily remove liquid. They want her to be "positive" on fluids so her kidneys will be pressed to function.
The hemodialysis is to get old drugs out so she can wake up. They also think she has a build up of some of her own chemicals that keeps her sleepy.
.
same basic feelings....let her wake up and have all body functions returned.

love you all
thanks for the thoughts and prayers...
we are all going to come out of this ESPECIALLY Melanie

donate blood

Carter Blood Care Website

2007-06-19T22:38:00.000-05:00

carter blood care
http://www.carterbloodcare.org/index.htm

HOW YOU CAN HELP!

2007-06-19T18:07:00.000-05:00

Patti and I were talking about all the love and support we have been recieving this past week. AND were trying to figure out how those of you who wish to help could.
She mentioned that Carter Bloodcare can help out and you can DONATE BLOOD to help out.

I think donating blood is a noble venture anyway, but you can use that to help Melanie out.
All donated blood properly credited to Melanie will help us out with with medical bills for blood she has used this week and beyond....and believe me, there has been quite a bit.

If you are anywhere that there is a Carter Bloodcare you can go in and donate blood under Melanie Dewey and a sponsor number of SPON042935. (that's SPON as in sponsor and then ZERO 42935). She is at Cooks Children's Medical Center, 801 Seventh Avenue, Fort Worth, Texas 76104.

IF you are somewhere that does not have CARTER BLOODCARE you can contact your local bloodcenter and tell them that you want to get blood credits to Melanie Dewey at Cooks Children in Fort Worth (address above, and I'll get the phone number to you if you need it). I can help you fill in information if you need it, just call my cell (I may not be immediately available though)

Tuesday 6-19-07 6PM

2007-06-19T18:02:00.000-05:00

fluid removal successful with no difficulties
she is being allowed to wake up and is off all drips except electrolytes and other nutrition
she responds to Patti (her mom) and my voice and the nurse told us to stop talking to her because she is hypertensive and we are shooting her blood pressure up. A great problem to have compared to what was happening.

we are now watching her wake up VERY VERY SLOWLY. Her liver has metabolized the drugs very slowly and they have been building up for a week now. They are giving her methadone to ease pain, but not keep her asleep.

She had a tough morning, but great afternoon.

Tuesday 6-19 1:10PM

2007-06-19T13:13:00.001-05:00

she is in with Dr. Erez to aspirate the liquid from the sack surrounding her heart (about 30 minutes?)
with local anethesia around where the needle will be inserted and no additional meds

Erez thinks that the liver that has been working slow may have a lot of meds stored up so it may be a few days before she wakes up.

This morning was tough, but this afternoon is brighter...much better in fact....Erez showed a little more calmness than usual....unintentionlally, I am sure, but he has given be a brighter day

Though I am the rookie in this situation, I am getting the feeling that we will be on the easier side of things once she wakes up

knock on wood

tuesday 6-19 morning update

2007-06-19T11:11:00.000-05:00

all meds are off except dopamine (blood pressure)
she is on electrolyte IV and another nutrional IV

The want her to wake up and hope this happens in the next 24 hours...they will be taking her off the vent when possible.

Her temperature is up
blood pressure and oxygen levels stable

Dr. Erez (cardiac surgeon) will probably aspirate the fluid from around her heart this afternoon
I understand the procedure to be relatively non intrusive and performed in the ICU

Pray for Kindney function and Pray for her to wake up and speak that soft voice to me again real soon

I am okay, my strength ebbs and flows...the house gets quieter everytime I go home
yesterday and today have been difficult
We (her mom and I) need most right now for her to be awake and aware...it's time for her to be awake again

love you all
i'll keep ya posted....
write me back in the comments if you find a chance

Monday 6-18 picture

2007-06-18T22:32:00.000-05:00

Monday 6-18 Night Update

2007-06-18T22:30:00.001-05:00

I am home to get some rest.
back at the hospital early tomorrow
they are going to try to remove some fluid build up that is below her heart
she has been on dialysis quite a lot and on hebrion or something to thin the blood
they blame the blood thinner for the fluid build up
her sedation meds are being reduced and her breathing tube is being monitored and directed towards her waking up and breathing on her own

I hope to give a good report tomorrow...today was a long tough day with the leg repair in the morning.

she seems to be "stable" and blood pressure holding

thanks for all your thoughts and prayers and check back later

Monday 6-18 Noon Update

2007-06-18T13:52:00.000-05:00

Melanie under went her leg repair just fine without any grafting
her blood pressure destabalized a little but it's back to 120/ 60 or so

the next step is to wake her up slowly and ween her off the vent
the vent has oxygen up to 55% the highest since last tuesday, but they say that is temp

so for now,
ween her off sedation
ween her off vent
dialysis

I hope to see those wonderful blue eyes and have her breathing on her own by tomorrow afternoon....one week after her initial surgery

Monday 6-18 Morning Update

2007-06-18T10:09:00.000-05:00

I have been asked by my mother in law to warn all readers that I am especially grumpy this morning.....so here's what's up

last night my favorite nurse, Rebekah, was in with Melanie for the 6PM to 6AM shift.
Why is that important? Because a really good, caring nurse can be hard to find.

I slept up here last night with a total of about 4 hours maybe. probably correlated to my grumpyness....

anyway enough about that stuff.

The anesthetic squad came in to get melanie around 8:30 this morning to take her to the OR. They will hopefully be closing both of her incisions completely that are on her right calf. Plan B includes a skin graf or graft or whatever the hell. I will let you know if Plan B happens.

So here were are waiting for this procedure to finish and watching news about the flooding and I am trying to calm down from the "Benny Hill" Show I saw as the jackass anethestic team took Melanie to the OR. I think I could hear the intro music in the background.

IF there is a pause between this blog and the next, take no news as good news ... I"ll get back on ASAP

Sunday 6-17-07 Picture of us in front of our house

2007-06-17T11:18:00.001-05:00

Sunday 6-17-07 Update

2007-06-17T11:11:00.001-05:00

I just talked to Melanie's mom:

Melanie will go into surgery monday morning to close up her leg that they opened to reduce swelling.

She had a great day yesterday with them pulling off a lot of fluid through dialysis and the swelling in her body has gone down quite a bit.

After the surgery they expect to take her breathing tube out and we can hopefully see those blue eyes again. I am sure she will be talking as soon as she wakes up and that tube is out!

Things are good and I expect a good recovery.

Wed 6-13 through Sat 6-16 RETRO STORY

2007-06-13T23:10:00.000-05:00

(I am writing this entry two weeks after the fact, so some details have become blury)

Coming out of surgery, Melanie was admitted into the PICU (pediatric intensive care unit)
I went to sleep sometime around 4AM Wed morning after getting oriented to all the bells and whistles of the machines in the ICU

Wed morning we had a wonderful RN, Rebekah, that taught me about her blood pressure (which was originally very delicate), her heart rate (that was on a temporary pacemaker), her blood oxygen level and several medicine drips she was recieving.

She was on some heavy duty sedative narcotics that were keeping her asleep and out of pain.

In the first week we learned that she had a lot of swelling in her right leg where they had the cathedor for the heart/lung bypass. They decided by the end of the week that they would have to go in and relieve the pressure in the calf muscles in order for blood to circulate more easily.

Her blood pressure was very unstable and typically low so they gave her blood pressure medicine to elevate it.

Her lungs and other organs had to wake up during the week and most, except kidneys, seemed to be coming around.

She was on a ventilator until late in week 2.

Tuesday June 12

2007-06-12T23:01:00.000-05:00

Open heart surgery that lasted about 15 hours
an update on her Rostelli Procedure she recieved at age 1

repair of hole size in between ventricles used in the redirection of blood flow correcting her birth defect (transposition of the great arteries)
replacement of conduit used to connect right ventricle and pulmonary artery

most of the surgery was the incision through years of scar tissue on her chest and the difficult closing of her sternum afterwards...there was excess seepage of blood that also had to be dealt with

she was on heart/lung bypass for about 9 hours