Stephen's Journey: Surgery

Thursday, June 23, 2011

Surgery

Stephen's hernia and Mediport surgery is officially scheduled for June 30th. We met with Stephen's surgeon, Dr. Kim, on Monday to go over everything once more and sign off on the consent for surgery. I know it's necessary for him to get his hernia's replaced and for him to get some sort of port for IVs and lab draws, but the reality of him having surgery is now making me have second thoughts. One part of my brain knows that once the hernias are fixed and we have a good way of drawing labs, his dialysis will work better and the doctors will have a better understanding as to what is going on with his electrolytes, his albumin, and his IGG. And that will prevent things like his seizures and from his potassium from getting too high and affecting his heart. But the other side of my brain is thinking that I'm putting him through surgery when it's not completely and 100% necessary (it is necessary, but I feel like we could maybe put it off a little bit longer). I'm just in total conflict with myself.

I guess it's because before he needed surgery to save his life. He would not have survived had we not removed his kidneys. But he's surviving and doing great....right now. We know and we've seen that change in an instant, but he's doing so great this week. What if he goes into surgery and doesn't come out of it? Or say something goes wrong and he collapses a lung or can't come off the ventilator? Or he gets this Mediport and then gets a massive infection or blood clot that goes to his heart? I'll forever blame myself because I'm the one that pushed the Mediport so hard because I'm the one who always has to take him to the hospital for labs. And it's torture! For me and for Stephen.

I just hope that we're making the right decision and say a little prayer that Dr. Kim and the anesthesiologists are on their A++++++ game next Thursday.

We will be admitted to the hospital next Wednesday morning to prepare for surgery and then will probably be there another 5-7 days afterwards until Stephen's been weened off the painkillers and is dialysis is back to 12 hours from 24 hours. Unfortunately, we will be in the hospital for Stephen's 6 month birthday on July 4th. Boooooo!!!

3 comments:

ciaraJune 23, 2011 at 1:18 PM
First, YAY!!!!! for a great week. You must appreciate and enjoy these good times!

Second, i cannot imagine the stress you are under making decisions for Stephen. I struggle over the decision of when to take the pacifier away from Vivienne, and you have such huge decisions to make. I am sure you made the right choice and God will watch over Stephen (aka Superman).

Sending you stength and love and positive thoughts!
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UnknownJune 23, 2011 at 2:33 PM
Eric and I will say much more than a little prayer. God is all over this, and will watch over Superman every moment. Please let us know if you need anything.
Love
Sarah
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AnonymousJune 23, 2011 at 6:07 PM
I love your friend's comment "God is all over this" because you what? He is! Don't ever second guess yourself.
Mary Elizabeth
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Our Crazy Kidney Life

As many of you already know, our son Stephen, was born with a very rare kidney disease called Autosomal Recessive Polycystic Kidney Disease (ARPKD). When the disease was discovered during my 27th week of pregnancy, Stephen was given a less than 1% chance of living more than a few hours past birth. He was to have such severely underdeveloped lungs that the doctors said he would likely not even take one breath. However, on January 4, 2011, we were granted our 1st miracle - and Stephen came into this world crying (and breathing!) and fighting for his life with fierce determination. At 6 days old he had BOTH of his kidneys removed and began peritoneal dialysis. Stephen came home from the hospital when he was 59 days old requiring 12 hours of dialysis every night as well as enteral (feeding tube) feeds during the day and overnight.

On May 9, 2013, we were granted our 2nd miracle, in the form of a new kidney from an extremely generous friend. Stephen received a kidney from a non-related living donor at the Children's Hospital of Philadelphia. He spent 13 days in the hospital recovering from his big surgery and ever since has been living life the fullest! His life is still a delicate balance of medications and weekly lab work, but he's an extremely vibrant, loving, active 2.5 year old.

This blog is Stephen's journey told through my eyes (his mother's), thoughts, and emotions, with extreme highs and lows. But there's no way we would be where we are today without all of the support, thoughts and prayers from our family, friends, and readers! Thank you!!