I had no idea that requesting a consult with another surgeon would be breaking so many unwritten laws of demi-God etiquette. (I have no spell check up here. Sounding out words will be a requirement for now.)
I’ve been visted by surgical residents, PA’s, and all manner of medical staff asking why I would want to look beyond the surgeon who did Parker’s first ostomy surgeries for another to perform any future surgeries.
I’ve been polite, but have stuck to my guns. I’m getting very good at handling the incredulous looks that have been thrown my way to let me know that according to them this mere mortal is even dumber than those they are used to.
Yesterday in talking with the GI Specialist the thought process is proceeding in this general direction:
There is the very distinct possibility that Parker actually did indeed receive the wrong stoma. Ahem. I’ve only been fighting for someone to recognize this for the last three years. His stoma is much, much larger than it should be and it is ‘trapped’ by the surrounding skin which in turn is pushing on it causing it to bleed when Parker gets upset or uses his stomach muscles to pass gas, etc.
Via the colostomy in August we know that the only part of Parker’s stomach that was having issues was about a 10 cm area that included his stoma.
We will also be adding dye to Parker’s feeds to see if he could be aspirating on them via the reflux process. If we see colored stuff coming from his trach we will know there is a problem and that he will indeed need a Nissen.
And we will most likely be participating in another PH probe within the next couple of days. That is the ‘gold standard’ of knowing whether or not we have a need for a Nissen or not.
If not, then they will proceed with a G tube placement to get that ng tube out of his nose and the opening of his stomach.
We will also be upping one of Parker’s meds that helps to empty out his stomach of foods to make sure that mobility within his his esphogus isn’t too slow. He’s gained a couple of pounds since August and it makes sence that his dosage would need to increase.
So, in nutshell we are looking a surgery for stoma repair, a G tube, and perhaps a Nissen. Instead of one huge stoma with two openings, Parker would receive two small, button sized stomas, each with one opening each. The type of stoma he should have received in the beginning.
This, of course, could all change when we meet with the new surgeon.
I’ll keep you posted.
Please keep the prayers coming.
Surgeons all seem to have a God complex – and I, for one, think that it is good that you have questioned the one who did Parker’s surgery. Everyone makes mistakes, and when they do – they should admit them and apologize, not try and cover their butts
I’m sorry that Parker is looking at so many more surgeries, but I pray that they will do the trick!
And – Happy Happy Anniversary – grilled cheese and all
I’m glad that you could at least spend time with your prince charming and reflect on your six greatest blessings 
Hugs!
I am praying for you and Parker and have added your graphic to my sidebar. I will visit to keep updated. You and Parker are in my thoughts and prayers. Keep you eyes heavenward.
Blessings,
Mary
You stick to your guns, missy! Way to go. No doctor or resident is stronger than a mother’s love and determination. I can’t stand the thought of more surgeries for Parker, but you’re doing the right thing in asking for an additional opinion (or more if deemed necessary). If he needs surgery, goodness, it should be the right ones this time.
Love you guys. Hugs and prayers, always.
Thank you so much for the update Tammy. You are all contantly in my thoughts and always in my prayers! I hope they get things right for that sweet little guy. Poor baby. It just breaks my heart. He had the sweetest face you could ever see!
Much love to you all. Please hug and kiss that sweetie pie for me.
Amy
Tammy – praying for Parker! Praying you get answers, and the right ones. You are all in our thoughts.
Happy Anniversary!! 20 years is a lot to celebrate.
Sending lots of love,
Michelle & Matthew
Hi, My name is Karla Guarino and I have an ileostomy since the age of 17, I am now 37. I have had 17 surgeries in all and was told that I would never have to live with any sort of bag, but I got a Doctor who thought he knew everything and prayed upon my Mother and Fathers fears, 11 of these surgeries took place within one year and I died 6 times on the table.
You make sure you do the best for you child, I know that it is expensive but if you cannot afford it look into other ways of getting the money, there has to be some sort of organization that could help. I live with the worse pain of my life everyday, I am on high doses of pain medications everyday, the only thing that gets me through is my husband who has been with me since the begining, he loves me no matter what.
If you need to talk or have any questions, please feel free to contact me at karlaguarino@comcast.net.
Hi Hope the best for you and your family.