Jump to content

dkp

Regulars
  • Posts

    1793
  • Joined

  • Last visited

Posts posted by dkp

  1. I have another story to tell and a picture to post but that will have to wait until a little bit later. We're being discharged today and I have some time alone with my daughter. I will post this later today or tomorrow morning.

    I would again like to thank you all for posting. Your words go much further than you may realize.

    Thanks to God for an exceptionally smooth procedure and recovery. I am confident that I would be thanking Him had the results been otherwise. His blessings fall on the just and the unjust. This past week they have fallen on my daughter. For that and so many like it, I am eternally grateful.

  2. Tom,

    Thank you for your kinds words and prayers. This forum continues to amaze me in the support is offers for the members. I am not a terribly frequent poster yet the support I have felt is tremendous.

    What a special friend you must have been (and continue to be by continuing his legacy) to Jimmy. I hope that Sophia is able to have such an impact on the lives of others as Jimmy's did on you. Isn't it ironic that those who seemingly have to most to complain about are often the ones who are the happiest and serve as such inspiration to others?

    Thanks for sharing that memory with us, Tom. I'm sure that Jimmy would be proud that you remember him with such great fondness.

  3. Dave,

    I'm sure that I will look back on this time in our lives with a certain degree of fondness, perhaps similar to someone who has served in combat and felt the bullets flying just inches overhead. A situation that most would most certainly not choose to relive; yet one that is unimagineable living without.

    I set up a website for Sophia when she was firstborn and we were given her diagnosis. Writing on it has been therapeutic (sp?) for me yet no matter how many words I put down, nor how accurate my description it is very much like the Vietnam Veteran returning from a two-year tour and trying to answer the questions, "What was it like to go to Vietnam? What was combat like?" There is simply no way to describe something like that nor this in a way that is totally understandable. You just have to live it to understand it.

    Dave-I most certainly do know what you are talking about. Thank you for posting.

  4. Another brief update: Her second-to-last chest drainage tube was removed yesterday afternoon and the last one this morning. The wound is looking fairly good with no sign of infection and they are talking about us heading home sometime today or tomorrow. That may appear to be a hasty retreat, if you will, but she no longer has any meds fed via IV injection, is eating and drinking well and appears to be doing quite well. Since longer hospital stays are directly correlated to contraction of infections and the like it is a good idea to head home when the patient is stabile, which Sophia is.

    I will write a bit more today as we have guests coming up to see her momentarily. Thanks again to all who have posted and continue to follow Sophia's story. Thanks to God for an exceptionally smooth surgery and recovery.

  5. 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.

  6. 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.

  7. 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.

  8. 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.

  9. 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.

  10. 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.

  11. PostSurgery014.jpg

    I wish I had a before and after picture of her hands. If any of you have ever seen someone who is in Congestive Heart Failure you know what the nailbeds, tongue and lips look like. Sophia's nailbeds have always been blue and her fingers swollen to the first knuckle. You can see faint traces of this in this picture but the difference is absolutely astounding. Just seeing this has brought us to tears.

    She is still on the ventilator but is breathing 29 breaths per minute on her own and the vent is doing about 10. They are planning on removing the vent sometime today. The rack of meds and iv pumps behind her is also being diminished. Her heart has been relying on the pacemaker a bit more than they expected but most of that data was surgery +24hours and there are still many, many variables that all play into one another that may be affecting that. All in all she is doing great.

    As a matter of fact, she stirred greatly this morning when she heard our voices. They are still medicating her to keep her still but I imagine she's going to really be fighting it within the next 24 hours. Sophia is definitely a fighter and they will have a hard time keeping her still. What an absolutely emotional few days it has been and will continue to be. I'm definitely going to need a vacation after this.

    Thanks again to all who have posted in this thread. Your support is greatly appreciated.

  12. A quick update: Sophia is finished with her surgery and is now in her room in the Pediatric Intensive Care Unit. Everything went very well throughout. We saw her briefly as she was being transferred from the operating room to her room in the PICU. We were able to give her a quick kiss and then she was whisked off.

    As you can imagine, we are on the edges of our seats as we await the phone call informing us that we may go see her.

  13. Wow, a heartfelt thanks to all who have posted. Your comments mean a great deal to us. Sophia just went onto the bypass machine and is now at the point where the repairs are being made. Everything has progressed very smoothly today, although her oxygen level was about 7/8 points lower than normal.

    Carl-we saw an electrophysiologist here at DeVos Children's Hospital around a year ago when they were looking deeper into Sophia's rhythm issues. The physician came from a Texas hospital, perhaps the one you were at. His name is Arnold Fendrich and he would be listed under with their pediatric cardiologists.

    Thanks again to everyone who has posted.

  14. My youngest daughter, Sophia, is heading into her third open-heart surgery tomorrow. I'm sure that many of you will recall that Sophia, who turned three on August 12, was born with a series of congenital heart defects generally referred to as, "Hypoplastic Left Heart Syndrome." Her specific diagnosis is actually, "Hypoplastic Left Ventricle with unbalanced A/V canal," for those of you in the know, but HLHS is practically the same. She had her first surgery at eleven days of age and the second just before reaching six months.

    Sophia has essentially one-half of a working heart with a single-ventricle (right) providing all of her circulatory function. These three surgeries are geared at reducing the load on that ventricle, the least efficient of the two, and maximizing the oxygen levels in her bloodstream. After this surgery there will no longer be any blood that is pumped into her lungs. Rather, it is what they call a passive flow or pressure that drains the blood into the lungs to pick up the oxygen. Sounds incredible, doesn't it?

    One other key ingredient often included with this series of defects is a single upper chamber, rather than two. This creates a problem with the mixing of the highly oxygenated (red) blood with the oxygen-depleted blood (blue) which reduces the overall level of oxygen in the bloodstream. This surgery will finally separate the two which will result in a higher overall oxygen level. Again, for those of you "in the know," Sophia's O2 sat level after the first surgery was in the low 70's, quite common post Norwood. After the second surgery it gained around 10 points and is often in the 81-83 range. She should gain another 10 points or so after this third surgery.

    What does this mean to Sophia? First of all, she will appear pink, instead of the blueish/gray current coloring. Additionally, she should have increased digestion times (something that has been a major struggle with her) and basically all of her major organs will benefit from the increased oxygen levels.

    She will also be having a pacemaker "installed" during this surgery.

    My remark earlier in the post about this being incredible should not be taken as the flip comment of a wide-eyed youngster. There are certainly many inherent risks not only in this surgery, but living with a single ventricle in general. I am constantly amazed at the technology available to us today and feel oh so blessed to have had her born to us when she was. This, by the Grace of God, is the only reason I have my daughter here with me today. Her days will likely be decades fewer than will mine and will be frought with complications, but I am so grateful for every precious moment that I have with her. I have not a drop of anger, hostility, nor indignation within me towards her Creator for burdening her with this and have already seen her life impact others in a positive way. I am saddened by her condition, no doubt about it but try to treat every day as a gift with this beautiful child.

    If you are interested in reading more:

    http://www.cincinnatichildrens.org/health/info/heart/diagnose/hlhs.htm (The "Flash Movie" gives the best graphical representation I have seen)

    http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/sv.htm#Fontan

  15. Me neither (regarding upgrading).

    BTW, does anyone know if this problem is a hardware or a software issue? My guess is hardware or else I would assume it would have been addressed in a system update (unless it has and I don't know about it).

  16. ...I have another PS3 question. I am considering some receivers that do not have HDMI connections. Has anyone compared the component out (using an adapter cable) and the optical audio? How does look and sound compared to HDMI?

    I’ve had mine since April and couldn’t be happier.

    Also have an older receiver so I have HDMI going to the TV and Optical to the receiver. One thing you should keep in mind is the PS3 can not output optical and HDMI audio simultaneously so you have to make a choice. Obviously, I chose optical. BluRay, Standard DVD, and PS3 games sound fantastic. Can’t wait to upgrade the receiver and here HD audio to go along with the HD video!

    You posts says the PS3 can not output optical and HDMI audio simultaneously, then say you can't wait to upgrade your receiver so you can hear HD audio. Wouldn't that HD audio come from the HDMI cable? So then its not the PS3's fault, its your receiver? I am getting a PS3 at the end of the month and your post just has me curious. Does the PS3's HDMI play audio and video? or is it like you said, you need an optical along with the HDMI?

    The PS3 will allow users to output the video via HDMI and audio via optical but will not output audio via HDMI and optical simultaneously. Since his receiver does not have the HDMI input he is using the optical output on the PS3 for audio and the HDMI to his tv. I am running something similar although my video signal runs to a projector and the audio (via optical) to my preamp. When I upgrade my preamp I will be able to use the single HDMI cable as will he when he upgrades his receiver. Clear as mud, right? [;)] I hope that helps.

  17. Get Scat Mats. They are a 9 volt battery powered clear plastic floor pad that put out a harmless electrostatic discharge when stepped on. They work 24/7 and will actually count the number of trigger events. Set them in front of the speakers and the cats simply will not walk on them, period. We shut down 3 dogs from going into a room by blocking one doorway with one of these mats. The room has other entrances and all we needed to do was put down clear plastic that looked like the real deal. They're not cheap but they will work. You won't even step on them. They'll pop you even through socks. We got ours at Pet Depot or some such commercial store.

    Scat Mats, eh? Hmmm, I can think of lots of ways to use those... [6]

    They sound like the best idea so far.

  18. We have several wild cats in our very suburban neighborhood as one of our neighbors feeds them. This probably keeps the mouse population low but we also do not see as many rabbits as we used to. It really grabs your attention when you hear them fighting, wow!

  19. LOL @ the electric fence comment.

    I found something quite simple that worked wonders when I was training our cats. Our cats had several bad habits and this method really helped eliminate those problems.

    My wife had picked up a small water spray-bottle at the dollar store that she used for something or other and had it sitting out one day when one of our cats was doing something that I had repeatedly attempted to correct (to no avail, I might add). My temper flared as I watched the cat doing his thing when I noticed the spray bottle sitting there.......and a smile crept across my face. I will let your imagination finish this story (I probably gave him a bit more than his fair share that day) [st] .

    This little spray bottle worked very well but our cats were pretty smart and continued in their bad behavior until they saw either my wife or I reaching for the bottle. As soon as they would see us reach for it they would vacate the room with great haste. As a matter of fact, it wasn't very long before we stopped using the water bottle altogether as we noticed that simply mimicking the sound it made "KWSSST KWSST KWSSST!" was just as effective. Eat your heart out, Pavlov's dogs!!

    Obviously you would want to keep a towel handy in the event that you miss and hit your speaker.

×
×
  • Create New...