Photo Journaling Ethan's Surgery Progress?

I know the title sounds a bit morbid; photo journaling my son's reconstructive surgery. BUT, I have got to tell you how insane it was for me trying to google images of this surgery and finding NOTHING - no stories on similar surgeries, NOTHING.

As a parent sometimes our first source to turn to for information and reassuring photos is the internet, and for me to not be able to find anything was HARD.

I imagine there are TONS of other people who are told the same thing we were told and they should know to never just trust one doctor and always get a second opinion..I know I would find something like Ethan's story and his healing photos VERY helpful. I know I WISHED to the high heavens I would have been able to find something to ease me for it all, and there was jack!

I also think as stressed as I was, I know JUST what parents who have a little boy w/ the same defect would be going through and they'd find it resourceful to know how he healed, how the surgery went and see photos of his daily progression.

The first couple of days were icky looking the last day in particular was GROSS. But today things are really taking a turn for the best and I am so happy!! I honestly thought (as bad as it looked initially) that it would look far worse, the doctor made it out to be uglier than it was, and truth be told as he is healing I am seeing what remarkable work he REALLY did do. It is amazing to me how he could use the foreskin to regraft his penile shaft where he did not have adequate skin and it trapped everything inside. AMAZING!

All the while he had explained the procedure to me I still couldn't figure it out, it was too hard for me to wrap my head around and grasp exactly what he was saying.

I really think other parents who are facing the same nightmare we went through earlier in the year would be able to breath a sigh of relief if they saw Ethan's story and were able to compare it to their own child's and know there IS hope. I also shudder to think how many other parents were misdiagnosed and told their children had micro penis as well when it really wasn't that at all but rather a congenital buried/trapped penis. As much as I hate my pediatrician for the nightmare she put us through with a misdiagnosis, I am VERY thankful she stopped the circumsicion because the urologist told us had they done it and she hadn't stopped it the obgyn would of botched it and he'd never have a normal penis b/c he would of not had that foreskin to use as a graft to reconstruct the shaft!

I really have so much thanks to give to Dr. Bukowski, he really did great work, if you could see the before and after, it's just amazing! (granted it's not the prettiest thing during the healing process) it is just NORMAL!! I am sure there will be scaring but the best thing for me is knowing that our prayers and cries were not made in vain and that when no one else heard us, Dr. Bukowski stepped up and helped, he did perfect work and he was just a wonderful surgeon and urologist. I am greatful that Ethan was able to have this done now as opposed to later where he would remember it and or not want to do it, and I am thankful Dr. Bukowski did it before he hit any stage in his life where he would have to face the dreaded locker room scenario and not be able to explain his birth defect to his peers.

I never really cared how things looked b/c he is my son and I love him no matter what, but what I cared about and what hurt me more than anything was knowing he'd be at some point in his life wondering why he was different and if I didn't step up and force myself to argue with his pediatrician, and force myself to dial every pediatric urologist in North Carolina even though so many people wouldn't give us the time of day, I'd always hate myself for giving up.

And Dr. Bukowski I believe really was Ethan's saving grace, I am so thankful we were able to find him and that he didn't give us the cold shoulder like everyone else. I am thankful in a sense everyone else turned us away b/c of that we were able to find the best of the best and again, I really do know deep in my heart God answered my prayers when he heard my begging for Ethan not to have the micro penis condition, and begging for someone to properly diagnose his condition, and then later begging for it to be able to be treated and fixed.

This year was the worst year but it was also a year to be thankful for as well as a year to learn and grow from. Sometimes we question why we are put in certain life situations and we say we are not strong enough, but the truth is everyone is really stronger than they think they are and any situation you hate in your life could ALWAYS be worse...and I only wish his urologist and the staff knew just how much I really am thankful from the bottom of my heart for every single last thing they did for Ethan. How do you begin to thank someone for changing your son and making the correct diagnosis and treatment? I just hope they will one day know how much we appreciate all they did.

From 11/30/2009, Ethan's Surgery

First of all, THANK YOU to everyone for your kind words and prayers. I was so nervous that the big day was finally here. It was really reassuring to hear from everyone and especially two people whose son's had a similar reconstructive surgery.

We got to UNC at 7 am and went into admissions for surgery. When we arrived to the surgery unit we waited a good 2 hours.

They took us back and Dr. Bukowski explained everything to us all over again about how he would do the partial circ. to release his trapped penis and then do a vertical incision down the shaft to release the penis where the short shaft/foreskin on the underside trapped his penis inside his body. I asked him if it was common, but more so to see how many he did b/c I heard it's a rare birth defect and he then said he's done them plenty of times. Which re assured me all the more.

The anesthesiologist (spell?) came in and had us sign paper work and he was off in no time. They put him out with a gas then gave him a spinal block and kept him under general anesthesia. After the 4 hours were up the doctor came to consult with us in the recovery area, he was SO SO SO nice. He told us not to be alarmed when we first see it bc it will be very ugly and swollen but that in a few weeks it should all heal nicely.

A little while later I was asked to come to the recovery room to see Ethan (only one parent could come and i will be damned if Doug got to go and not me, I am stingy and very protective lol).

So I got back there and felt SO bad bc he was inconsolable and crying non stop. I felt SO bad. His foot was so swollen from his iv and the first time I saw his penis after wards I kind of cringed bc it was a bloody mass:(

After a good few minutes they gave him some tylenol 3 and codone for pain and he was good and fell asleep. They were able to then put us in a discharge room afte rmonitoring his stats and Doug got to come in then. The nurse went over instructions briefly but everytime I asked a question she'd say "it doesn't really matter the doctor didn't leave this in the instructions" but I am DUMB and I WANT to know, I know CRAP about penile surgery ..sadly..

So then we discharged and when we got back to Fayetteville we picked up his script and some neosporin and went home. I got to feed him and change him (and yes, morbid as it is I took a photo of it b/c incase god forbid anytihng was to go wrong i want all documentation and all). Right now it's held up by a clear bandage that looks like tape, you can see how grossly swollen it is and you can see his Y incision stitching. I pretty much can't recognize it really right now and just will go on the doctor's word that it will look better within the following weeks. He said we cant take off the bandage for 2 days, and to keep it dry except, i don't know how it's possible when urine already got into the clear bandage :(

And no soaking baths for a week. I just now pray it all heals well.

As crappy as this whole experience has been I am THANKFUL it was not the initial diagnosis of micro penis our crappy pediatrician gave us. I am also thankful after much painful pushing I found UNC and Dr. Bukowski and I am thankful he saw Ethan when no one else would and more so that he did everything he could to fix his defect.

I'll post more later but right now I'm going to get back to watching my little guy sleeping, and again THANK YOU everyone for your words it REALLY helped with my anxiety last night and today <3

Journal Entry from 11/29/2009

UNC bound tomorrowTomorrow is the big day. And my nerves are still warped.

We will be leaving for UNC sometime around 4 am to be there by 7 at which point they will do Ethan's labs for his surgery. At 10 am he should be going under for the 4+ hour reconstructive surgery and anesthesia.

While I have faith in the doctor's and the anesthesiologists, PLEASE keep him in your prayers and thoughts. I'll be on edge all day so you know if you have any anxiety pills, slip me one? (joke..not really joking haha..)

So no food past midnight, and no liquids past 6 am. OMG it's gonna be hellish b/c he LOVES to eat hah.

Yeah, so next time you hear from me may be a couple days, my parents will have mimi for the next couple days or so.