Wednesday, September 10, 2008
New pic.
how do you like the pic. I put together? I am working hard to learn all this computer stuff.
Friday, September 5, 2008
rescheduled AGAIN!!!! Thursday September 4, 2008
Ok i have pretty much been null and void lately and I am sorry to all who like to know how we are doing and for the rest of you who don't care you can just close this note now.
Let me start with the latest and work my way back....This might be a LONG NOTE.....
Tuesday I took Shaela in to get all her pre-ops done (blood work, x-rays and so forth). She was such a trooper during all of it and I was so proud of her. She did shed a few tears during the blood work but she did not pull away or act mad at them, she even told them thanks after all the needle work....what a sweet heart. Then Wednesday morning around 4:00am the hospital called and cancelled our our surgery. The surgeon today told me they had an emergency transplant and it took all night and he did not feel right to stick it out and do Shaela's. He said in his younger days he probably would have but, he feels as if he has now matured, gets tired and knows that he works better with more rest. Anyways we rescheduled for today at 7:30am. We woke up at 4:30, took Gidget to grandma's and checked into the surgery area. When we had woken up Shaela this morning she sounded a little horse and had a VERY slight runny nose so we were a little worried, but by the time we even got to grandma's she seemed normal. Well the surgeon came in to talk to us about the upcoming surgery. He explained that what we thought was going to be a fairly straight forward surgery may be a very "RADICAL" (his word not mine) surgery. Shane asked what he ment by this and he said that he was hoping from looking at his notes from her last surgery that he could just go in a clean up this tissue that is narrowing her valve with minimal complications, but after looking at her ultra-sound he does not think that will be an option. He is not positive until he gets in there to know for sure. But the other option that he thinks he may have to do is take her Pulmonary Valve and replace her Aorta Valve with it and then transplant a new donor valve for her Pulmonary Valve. This is not a simple surgery by any means and if it goes down this road there will be MANY more surgerys to replace the valves again. Also we still have the problem with the Mitral Valve, right now it is doing great and we hope it still holds on because I asked him about that transplant and he said "I don't even want to talk about that yet, that is a severe surgery with many complications and very high risk in her case." So of course are hopes are that the mitral valve will stay put. We asked the risk factors on the other vavle transplants and he says that he has lost a few but they were younger with other factors, but he also said he has never had a case like her either. (she gets that from me, we are here to pave the road for others) He can not tell us her life span after the surgery for sure, because it is a fairly new surgery. it has only been around for about 20yrs and that is new in medical terms, So at least possibly 20 yrs. ADULTHOOD here we come! :) Shaela has been pretty upset today. I do believe it is from the whole rollercoaster ride of feelings and she is so young and trying to be so adult. She had mentally prepared for this surgery and was excited to do it and for it to get cancelled twice on her I think in threw her for a loop. The doctors are very open when they talk with us and her, and she was around when he told us that they have lost some to this surgery, but I really don't think she understood that part, he did it very tactfully in front of her. Well after all the explanation of what to come we told him we were worried about her horseness waking up and her runny nose. He said that with what we have to possibly do that it would be better to wait. He said some kids come in not knowing they have a cold and get on the ventaltor and end up not getting it off for a month because of it, so it is better to be safe then sorry. So we have to reschedule the surgery for the end of this month because the surgeon goes out of the country next week and my husband goes to Texas for some training in a couple of weeks...Party at my House! :) He did tell Shaela NO MORE RUNNING until after surgery.
All that know me know that I don't sleep much, but I am ready to now. I can not ever sleep the night before these things and so I have not slept in 56 hours and still counting. I have my Dt. Mountain Dew at work for me for now, until I have the girls home from school and all is settled. Then Bed here I come.
I know I said I would post more of what is going on with life other then heart stuff but this is pretty long so I will do that for you another time.
Ohhh, P.S. I don't have the heart to tell shaela she has to do all the Pre-Ops again! :(
Thanks for all your prayers and we love you all.
Let me start with the latest and work my way back....This might be a LONG NOTE.....
Tuesday I took Shaela in to get all her pre-ops done (blood work, x-rays and so forth). She was such a trooper during all of it and I was so proud of her. She did shed a few tears during the blood work but she did not pull away or act mad at them, she even told them thanks after all the needle work....what a sweet heart. Then Wednesday morning around 4:00am the hospital called and cancelled our our surgery. The surgeon today told me they had an emergency transplant and it took all night and he did not feel right to stick it out and do Shaela's. He said in his younger days he probably would have but, he feels as if he has now matured, gets tired and knows that he works better with more rest. Anyways we rescheduled for today at 7:30am. We woke up at 4:30, took Gidget to grandma's and checked into the surgery area. When we had woken up Shaela this morning she sounded a little horse and had a VERY slight runny nose so we were a little worried, but by the time we even got to grandma's she seemed normal. Well the surgeon came in to talk to us about the upcoming surgery. He explained that what we thought was going to be a fairly straight forward surgery may be a very "RADICAL" (his word not mine) surgery. Shane asked what he ment by this and he said that he was hoping from looking at his notes from her last surgery that he could just go in a clean up this tissue that is narrowing her valve with minimal complications, but after looking at her ultra-sound he does not think that will be an option. He is not positive until he gets in there to know for sure. But the other option that he thinks he may have to do is take her Pulmonary Valve and replace her Aorta Valve with it and then transplant a new donor valve for her Pulmonary Valve. This is not a simple surgery by any means and if it goes down this road there will be MANY more surgerys to replace the valves again. Also we still have the problem with the Mitral Valve, right now it is doing great and we hope it still holds on because I asked him about that transplant and he said "I don't even want to talk about that yet, that is a severe surgery with many complications and very high risk in her case." So of course are hopes are that the mitral valve will stay put. We asked the risk factors on the other vavle transplants and he says that he has lost a few but they were younger with other factors, but he also said he has never had a case like her either. (she gets that from me, we are here to pave the road for others) He can not tell us her life span after the surgery for sure, because it is a fairly new surgery. it has only been around for about 20yrs and that is new in medical terms, So at least possibly 20 yrs. ADULTHOOD here we come! :) Shaela has been pretty upset today. I do believe it is from the whole rollercoaster ride of feelings and she is so young and trying to be so adult. She had mentally prepared for this surgery and was excited to do it and for it to get cancelled twice on her I think in threw her for a loop. The doctors are very open when they talk with us and her, and she was around when he told us that they have lost some to this surgery, but I really don't think she understood that part, he did it very tactfully in front of her. Well after all the explanation of what to come we told him we were worried about her horseness waking up and her runny nose. He said that with what we have to possibly do that it would be better to wait. He said some kids come in not knowing they have a cold and get on the ventaltor and end up not getting it off for a month because of it, so it is better to be safe then sorry. So we have to reschedule the surgery for the end of this month because the surgeon goes out of the country next week and my husband goes to Texas for some training in a couple of weeks...Party at my House! :) He did tell Shaela NO MORE RUNNING until after surgery.
All that know me know that I don't sleep much, but I am ready to now. I can not ever sleep the night before these things and so I have not slept in 56 hours and still counting. I have my Dt. Mountain Dew at work for me for now, until I have the girls home from school and all is settled. Then Bed here I come.
I know I said I would post more of what is going on with life other then heart stuff but this is pretty long so I will do that for you another time.
Ohhh, P.S. I don't have the heart to tell shaela she has to do all the Pre-Ops again! :(
Thanks for all your prayers and we love you all.
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