Wednesday, January 27, 2010

Here we go again

"Be faithful in the small things, for it is within them that your strength lies" ~ Mother Teresa

So....Riley is going to have surgery. Again. Last Friday, he had an appointment with his surgeon, who 1) was thrilled over his current health and weight/size and 2) was amazed that he's walking. After much discussion with Dr. H, here is the bulleted list of what was discussed and will happen.
  • We will go up with Riley on February 8 to Duke. He will have a contrast enema that morning and then other pre-op bloodwork and preparation. He will NOT be admitted that day. 
  • We will stay in a hotel that night, and take him in, at whatever time they tell us on the 8th, for surgery, on February 9. 
  • The contrast enema is to rule out any potential blockage in his large intestine that may have caused the leak in September. If there is a blockage, they will fix that on the 9th. If there is no blockage, they will just take down his ostomy on the 9th. 
  • He will be on clear liquids ONLY all day long on the 8th. I'm exhausted already just imagining how well that is going to go over with him. 
  • The surgery will be handled the same as last time, and the expectations of what will happen afterward remain the same as last time also. It is an exact repeat of the surgery on Sept 2. 
Specific areas of concern:
  • That they will not be able to get an IV in him again, and he will require another central line, which is an infection risk.
  • That there will be a blockage, and they will have to remove more intestine. Less is not better.
  • That the free end of his large intestine (that is floating around in his belly) is somewhat not in great shape, and that dye will leak into his belly during the contrast enema. The surgeon feels its unlikely, but it's a possibility.
  • That he will develop another leak afterwards. If this were to happen, we will be forced to decide whether to try a drain ( and risk infection and him becoming VERY sick - but potentially healing fine) or put his ostomy back AGAIN. If that were the case, they will not try to take down his ostomy for a year to 18 months from now. If this happens, then that means at this point, they can determine that there is something "wrong" with Riley's healing abilities.
So I think that about covers the basics. There is a lot at stake, and this will determine a lot about his long term future prognosis. I find myself more worried about what happens after the surgery, than the surgery itself. I'm reminded of when he was a newborn, and first sick,and repeating over and over "please don't let him die" I find myself in the car driving almost chanting to myself "please let it work, please let it work".  I also find myself filled with anger and disappointment over the short lived success of his surgery in September all over again.


michelle said...

You know that Riley is in our prayers every day as it is, and that we are always praying for the same things you are, "Please let it work." We are always here for you guys and would love to help distract Riley from thinking about eating on the 8th!

Michelle, Scott, Jason & Braden

Anonymous said...

Lindsey and Jay, prayer is very powerful and you have so many prayers that go your way to Riley and your family. We will continue to pray and thinking of you as always, Debbie and Gary

Anonymous said...

Lindsey, Keeping Riley in my thoughts and prayers daily. I pray that God will bestow his healing powers on Riley and guide the doctors and nurses who will be working with Riley to make this surgery be successful. Love and Blessings to you, Jay, Travis and Riley. Love you, Pauline

Anonymous said...

Prayers continue to be with Riley and his entire family.

brad.kellie.babyc.lucy said...

I am crying. Thanks :)

We will certainly keep Riley in our prayers and if you don't mind, will ask for prayers from our blog readers and FB friends.

Please let us know if there's anything at all we can do. I know ho distressing this is, and we'll be stressing out until Riley is out of surgery and healed.

We love you guys,
Kellie, Brad, and Carter

Jenny Regan in Chapel Hill said...

Lindsey, Please don't hesitate to call on us for anything you need while you are up here. Bed, meals, visits. We're about 20-25 min to Duke Hosp. Wishing everyone a smooth trip.

Vicki Jensen said...

I heard about Riley from Kellie, Brad & Carter. I hope that Riley's surgery is successful and I'll keep you all in my prayers.

mom to Jack (one of Carter's CDH buddies)

Aep said...

I heard about you guys and Riley through Carter's mommy and I am here to offer you my prayers and thoughts for Riley's upcoming surgery.
Hugs and prayers,

d a w n said...

I will be praying for you all, but especially Riley. Such a tough road--Remember "Footprints" is now that God will carry YOU.

Dawn, Matt, & Sean Grady
(Carter's friends)

Anonymous said...

Praying for you all.


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