thebes Posted August 29, 2008 Share Posted August 29, 2008 Damn, David, had no idea. I can't even begin to imagine what your family's been going through. Sounds good so far. Hang in there and my thoughts are with you and yours. Quote Link to comment Share on other sites More sharing options...
dkp Posted August 30, 2008 Author Share Posted August 30, 2008 Thanks again, everyone. Your words mean a great deal. Oscarsear: check, check, check, check and check lol. All is well on the Michigan front! (well, mostly) Update: Sophia was taken off of the ventilator yesterday and breathing with only a nasal cannula today with a modest amount of oxygen. Her pain level was very good yesterday and she did not require any morphine until surgery +around 29 hours. She was really recognizing our voices yesterday morning and when I mentioned the names of her two sisters she immediately straightened her legs, arched her back and tilted her head back while trying to mouth some words. This is the sort of thing that just melts your heart... Later in the day she became very conscious and aware of things going on around her. She was able to eek out a very raspy, "I love you," to me when we left the room to get something to eat. Touching. Throughout the afternoon she was constantly nodding her head "yes" and "no" and understanding everything that we were asking her. She was becoming a bit dry and enjoyed some ice chips and apple juice to drink. Just before we left for the night we had told her that we were going to head next door to go to sleep at the Ronald McDonald House. When we were about to leave she became very motivated and stated, "I want to sleep with you at the Ronald McDonald House." Wow, our jaws hit the floor and we laughed! The attending got quite a kick out of this as well. We told her that unfortunately she had to stay in the hospital until the doctor says it's okay for her to leave. She understood and accepted this easily. When my wife, Monica, called her nurse this morning she was informed that Sophia slept very well through the night and did very well overall. You will be amused to know that the very first words out of her mouth this morning were not to ask for her mommy or daddy. Nope, she asked for the doctor. Evidently she was interested in talking to him about when she can go home!!!! Remember that she just turned three about 2 weeks ago. This is one amazing kid. All seems to be going fairly well today. Some of her numbers have dropped a tad due to higher than expected fluid output and her blood pressure is a bit high. These things are being countered with higher inputs and adjustments to her medications. They have pulled two of her chest drain tubes (which is exceedingly fast, a very good and key indicator) and she is currently receiving a small amount of blood. More later.... Thanks again everyone; the support is very helpful. Quote Link to comment Share on other sites More sharing options...
BigStewMan Posted August 30, 2008 Share Posted August 30, 2008 We serve a good and great God David--this is certainly a very good report. i'm very happy for you all. Quote Link to comment Share on other sites More sharing options...
customsteve01 Posted August 30, 2008 Share Posted August 30, 2008 Good to hear that she is doing so well. You and your family are in out thoughts and prayers. Steve Quote Link to comment Share on other sites More sharing options...
mikebse2a3 Posted August 30, 2008 Share Posted August 30, 2008 What a wonderfull picture you posted of Sophia's hand dkp! I've sent a link to this thread to others because of how events like this can help to balance and recenter us all when we tend to get so caught up in our own trials and everyday events and helps us to open our eyes to our own blessings and human limitations. God brings peace and comfort and my prayers are for an abundance of these for Sophia and Your Family. mike tn[] Quote Link to comment Share on other sites More sharing options...
DrWho Posted August 30, 2008 Share Posted August 30, 2008 Wow, great news! So will this mean her immunity won't be as big of an issue anymore? Sophia has been blessed some really awesome parents [Y] Quote Link to comment Share on other sites More sharing options...
Mr. RF62 Posted August 31, 2008 Share Posted August 31, 2008 Very glad to hear everything is turning out for you and your daughter dkp, for a three year old, that is amazing how she is able to be aware of everything that is going on around her and know what she wants. Very strong girl. Thanks for the updates. Quote Link to comment Share on other sites More sharing options...
fini Posted August 31, 2008 Share Posted August 31, 2008 Great news, David! She's a sweetheart! My daughter (17...quite a bit bigger than Sophia!) will be having surgery in about 2-1/2 weeks. She's still my baby! Thank you for keeping us updated! Quote Link to comment Share on other sites More sharing options...
dkp Posted August 31, 2008 Author Share Posted August 31, 2008 Thanks for the support, good forum friends. Mike: To clarify a bit: Sophia did not really suffer from a poor immune system. Rather, we had to be careful with her as you would with any patient who is in congestive heart failure as any congestion could lower her already low blood-oxygen levels. Whenever she would catch even a very small cold or something similar, her blood oxygen levels would drop about ten points. This would affect her in other ways (that I don't want to go into here). All that being said, we will have to be very cautious with her in the 8-10 weeks following the surgery but I believe that many of the restrictions we have had in the past will be lifted. We will always have to be careful with her around others who are sick, especially respiratory-type illnesses. I am sooooo looking forward to having the shackles removed and getting all our lives back. Fini: Thank you; I will remember your daughter in my prayers. I hope everything goes as planned and the surgery fixes what ails her. Quote Link to comment Share on other sites More sharing options...
Wishbone Posted August 31, 2008 Share Posted August 31, 2008 My family(Wife,2 Daughters,& Son) & myself are keeping you in are prayers. Quote Link to comment Share on other sites More sharing options...
oscarsear Posted August 31, 2008 Share Posted August 31, 2008 Sophia had a serious congenital heart defect that has required multiple open heart surgeries to correct. Normally the right heart receives oxygen depleted blood and cycles it through the lungs. Oxygenated blood is then received by the left heart which then sends it out to the body. The right side of the heart is smaller because it does a smaller level of work. The left side is hefty being designed to push blood out to the whole body against sizable arterial back pressures. Sophia had just one ventricle managing all of this work and the vascular plumbing was all messed up. There was one ventricle pushing hard where it wasn't needed or wanted. High blood pressure in the lungs causes pulmonary edema. She also suffered from what is called venous admixture where oxygen depleted blood actually bypasses the lungs altogether and is sent out to the body mixed with some blood that had gone through the lungs. That's troublesome because if too much admixture occurs the venous blood gets over depleted of any oxygen and a vicious cycle starts that could be serious. Now she has 2 ventricles and blood going to and from the correct places. Few of us realize how complex we are and how amazing it is that most of us come out Okie Dokie. Quote Link to comment Share on other sites More sharing options...
gonzp Posted August 31, 2008 Share Posted August 31, 2008 WOW! I just seen this thread. Awesome that Sophia is doing as well as she is. I can only imagine what you and Monica must be going through. Your family will definitly be in our prayers David. Quote Link to comment Share on other sites More sharing options...
dkp Posted August 31, 2008 Author Share Posted August 31, 2008 Sophia had a serious congenital heart defect that has required multiple open heart surgeries to correct. Normally the right heart receives oxygen depleted blood and cycles it through the lungs. Oxygenated blood is then received by the left heart which then sends it out to the body. The right side of the heart is smaller because it does a smaller level of work. The left side is hefty being designed to push blood out to the whole body against sizable arterial back pressures. Sophia had just one ventricle managing all of this work and the vascular plumbing was all messed up. There was one ventricle pushing hard where it wasn't needed or wanted. High blood pressure in the lungs causes pulmonary edema. She also suffered from what is called venous admixture where oxygen depleted blood actually bypasses the lungs altogether and is sent out to the body mixed with some blood that had gone through the lungs. That's troublesome because if too much admixture occurs the venous blood gets over depleted of any oxygen and a vicious cycle starts that could be serious. Now she has 2 ventricles and blood going to and from the correct places. Few of us realize how complex we are and how amazing it is that most of us come out Okie Dokie. The emboldened statement above is incorrect. Sophia's heart is utilizing only a single ventricle (right) which is used to circulate blood to her body. There is no blood circulated directly from her heart to her lungs. Finally, the impression that this series of defects is "fixed" is a tad misleading. The heart is not fixed; the defects are merely worked around in order to give the patient the chance to live. Quote Link to comment Share on other sites More sharing options...
dkp Posted August 31, 2008 Author Share Posted August 31, 2008 Another short update: Sophia has had more of her IV meds either dropped or decreased to minimum doses and others (oral) have increased to offset. All of her numbers are looking pretty much as expected and she continues to absolutely "fly" (borrowing from the chief of the cardiovascular dept here) through this surgery. She is doing so well that they asked what we thought of moving her to the "step-down" unit. We thought that another day in the ICU would be better so I'm sure that tomorrow we'll be moving. Her last two chest drainage tubes will be removed tomorrow as well. I'm a bit short on time but everything here is going as well as possibly can be expected. Sophia continues to set the curve for the class of her type of patients. Thanks gonz and wish for the thoughts and prayers. Quote Link to comment Share on other sites More sharing options...
oscarsear Posted September 1, 2008 Share Posted September 1, 2008 Please pardon my presumptive explanation. There is clearly more to her circumstance than I thought. I am happy to hear about her continued improvement. Can you share what the future plans might be for her? Quote Link to comment Share on other sites More sharing options...
DU73 Posted September 1, 2008 Share Posted September 1, 2008 David – I am so glad to hear that everything has gone so well. Sophia sounds like one amazing girl and a real fighter. Though I think you also have done an amazing job, in all this that you and your family have endured you still manage to think of us and keep us updated. I absolute love your pic with you holding her hand – very powerful and heart warming photo. Best wishes to you, your wife and of course your children… Through my experiences when my kids are ill I always wish that I have their illness instead of them. You also appreciate how talented the doctors and nurses are, and no matter how much they get paid it is not enough in my opinion. They are the true heroes. Quote Link to comment Share on other sites More sharing options...
dkp Posted September 1, 2008 Author Share Posted September 1, 2008 Please pardon my presumptive explanation. There is clearly more to her circumstance than I thought. I am happy to hear about her continued improvement. Can you share what the future plans might be for her? oscarsear: No offense taken; no worries. At this point her future plans are a bit nebulous. There are some things that are likely to occur in the next, say, five years or so and others that are likely to occur much later. Sophia will need her typical echos, ekgs, physician visits and all those things that are now a part of our routine each year. Additionally, since she now has a pacemaker there will be a time when she will need to go in for surgery to replace the pacemaker when the current model runs out of battery life. Beyond five years is fairly difficult to say. Valve fixes or replacements and other various fixes are likely somewhere in her teen years (very rough estimate) and at some point it is likely that she will require a heart transplant. As you may imagine, our focus is much more near-sighted and we are simply enjoying every minute with her as we consider each a gift, and a blessing, from God. Thank you for yoru interest. Quote Link to comment Share on other sites More sharing options...
dkp Posted September 1, 2008 Author Share Posted September 1, 2008 David – I am so glad to hear that everything has gone so well. Sophia sounds like one amazing girl and a real fighter. Though I think you also have done an amazing job, in all this that you and your family have endured you still manage to think of us and keep us updated. I absolute love your pic with you holding her hand – very powerful and heart warming photo. Best wishes to you, your wife and of course your children… Through my experiences when my kids are ill I always wish that I have their illness instead of them. You also appreciate how talented the doctors and nurses are, and no matter how much they get paid it is not enough in my opinion. They are the true heroes. downunder-You are oh-so-right when you comment about switching places with our children to take away whatever it is that ails them. If I were so able there is not a place on this earth that I would be... Thank you for your very kind words. Quote Link to comment Share on other sites More sharing options...
Daddy Dee Posted September 1, 2008 Share Posted September 1, 2008 dkp, I appreciate what you are saying about being "near-sighted" to enjoy every minute with Sophia. To consider every minute a gift, and a blessing from God is something for which we have been designed, but all too many parents miss out on that. I think that has something to do with being rich, in what it really means to be rich. Blessings. Quote Link to comment Share on other sites More sharing options...
Timmikid Posted September 2, 2008 Share Posted September 2, 2008 Great how it's working out. You deserve a vacation indeed. Please keep sharing. Best wishes, Tim. Quote Link to comment Share on other sites More sharing options...
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