Daughter heading into surgery tomorrow

[dkp]

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.

[CECAA850]

[]

[formica]

I may be late to your thread... but glad to see you daughter is doing so well... [] My best thoughts and wishes to your whole family...

[kaiser SET say]

That is great news David, every time I read this thread I want to hug the little Kaisers! Sophia is a trooper and an inspiration. God bless your whole family

[Mallette]

David:

You have been supported on wings of angels. I know this having been there. While at this point it may not make any sense to you, I sometimes miss that closeness to God and exhilarition in the face of those beeping monitors.

For the rest of you, our families share this experience. I'll keep mine short because this is about Sophia. My daughter was announced to us as having "...been born with a heart defect not compatible with life." HLHS. She is now in the fourth grade. For those who have not spent the first three years of a childs life in the hospital watching monitors and trading all night shifts you will never understand.

My daughter and my wife are my heroes. I know that David knows what I am talking about.

Blessings,

Dave

[Tom Adams]

Hello David -

I too am a bit late to this thread, but have been readng it over the last couple of days. I just want to chime in and say that I too have asked for God's hand to be upon Sophia and your family both now and in the future. All of us, and I mean ALL of us have been touched by God's hand - some of us are just more in tune with it than others and are able to see the outcome of His blessings.

Growing up, I had a friend (Jimmy) who was my age who had a similiar condition to Sophia's. His complexion had that blueish coloration and his fingernails and lips were as you described. As a geeky, kinda outsider of kid as I was, I often wondered why of all the folks that he hung around with, that he picked me to be his bestest friend. Amazingly, I can still picture him. LOL....he was skinnier than me! But for good reason. His older brother was only 2 years older than him, yet was built like an ox. I remember how his brother use to pick us BOTH up and toss us around like rag dolls - being more gentler with Jimmy than me naturally. Jimmy started playing drums when we were around 11 and shortly thereafter he got into a band. I can still picture him on the stage in our High School auditorium drumming to a Grand Funk Railroad tune. He was special kid that everyone gravitated to and I was proud to be his friend. Didn't see it at the time, but that was God's hand touching me and others thorugh Jimmy.

Unfortunately, medical science wasn't as advanced as it is today for kids like Sophia and Jimmy passed away long after he was supposed to be on this earth (according to the Doctors). As for Sophia.....my speculation is that due to the exponential rate of advancement in medicine, her life on this earth will be much longer than you think and I pray that she out lives you.

Thanks for sharing this with us and letting me share a memory and for making me remember Jimmy.

Tom

[dkp]

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.

[dkp]

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.

[Mallette]

FYI Tom, and others...

Until around 30 years ago ALL children born with HLHS died with 2 weeks of birth. God was with us at the birth of our daughter in that she seemed to know that living the womb would be her death and she resisted. The doctor noted anomalies in her heart rate and summoned our ped, who arrived within ten minutes of her birth. Because he had interned at Texas Children's he diagnosed her immediately (many do not recognize the symptoms) and had her transferred within hours to Cook Children's in Fort Worth. There, the cardioligist explained to us that "...your daughter was born with a cardiac condition not compatible with life." He offered three options:

1. Compassionate care (let nature take its course)

2. Transplant

3. Palliative surgery.

With the help of surgeons Dr. Larry Fox (who started off by telling us to our faces that "YOU are your childs advocate and must learn to make informed decisions on her behalf. Do NOT expect your doctors to take that responsibility) and Jeff Heinle we became (by Dr. Fox's estimation) the equivalents of 3 year medical students in HSHS and made our decision for option 3.

The Norwood procedure opened one way to survive, and transplants another. 5 year survival is about 50/50 for either path. After that, no one really knows but some of the earliest recipients of the three stage (Norwood, hemi-fontan, and fontan) palliative procedure are now 30 or older and at least one female has born a normal child (maybe more...haven't checked lately). Upside of the surgical route is they keep their own hearts so there are no transplant issues to deal with. Downside it is three open heart surgeries in the first three years of life. Once complete, the child has what is basically a reptillian cardiac system, with the lungs acting as a collection chamber for the blood that would normally pass through the right side of the heart. It has worked well in alligators for several million years, and it seems to work well in humans.

My daugher is now 10 and over 6 years post-fontan. While she takes a number of drugs (she takes anti-seizure meds due to epilepsy likely brought on by extensive time in heart-lung bypass) you cannot tell by looking at her that she is not heart normal. She's pink and sats run 98% or better all the time.

She is daddy's "bestest goo" and always will be.

Dave

[dkp]

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.

[DU73]

Tom - to Jimmy - touching story - I can only imagine Jimmy is smiling down at you and his brother while beating those drums.

David - fantastic news []

[Cal Blacksmith]

I just now read this thread for the first time, I am so glad that so far, things are going well. Your faith is strong and God will see your family through this no matter how the road may twist and turn.

May God be with you always.

[IndyKlipschFan]

Stories like this on the board are comforting when one of our own is under stress.

I am happy she is progressing, and wish her and you all the best!

Were a strange group, like family!

Sometimes were on each others nerves, but deep down we kinda like eachother just as we are! ..

[Joe Shmoe]

Wow...Sorry David, with all that's been goin on in my own life lately I haven't had much time to check in here.

Ugh... your little girl has been through so much and at a such a young age... our prayers are with you also! Have you been here in Grand Rapids for all of this? I wish I would have known... I have been in and out of Spectrum myself for my Dad & right across the street in the new Cancer center quite a bit latey. Let me know when you will be or if you still are in town & I'll come up for a visit. []