Tuesday, March 22, 2011

McKinley's Surgeon Meeting

Today we went to meet McKinley's surgeon, Dr. Letton. Although, today meant education, which is a good thing, I was awfully high strung anticipating today. Its just overwhelming. There is really no other way to describe how I am feeling.

Dr. Letton ended up being in emergency surgery. So we had to meet with one of his two fellows. I couldnt get frustrated, because if the roles were reversed and McKinley was needing surgery, I would want him to be operating on my daughter and not meeting with parents back at his office. However, I was disappointed. His nurse was very apologetic for him. Dr. Letton wanted a good phone number so he could call me tomorrow. I appreciate that. I am still going to want to see his face and shake his hand before he operates on my daughter.

We met with one of his two fellows Dr. Keckler. He was very knowledgable and I walked away feeling confident that the team will be a good fit for our needs.

With the help of my dear friend, Mindy, I had several questions to ask during our meeting. I cant tell you how nice it is to have friends in the medical field who know what the "good" questions are to ask. I felt so much more prepared.

This is what we found out today: (I am going to give alot of information.. you might not be totally interested, but I want to keep all this information)

Specific to the fellow we met:

What year in training are you?
- He has been doing surgery for 8, going on 9 years. Pediatric surgery is such a specialized field. As he told me "a rookie wont be operating on your daughter".

How many omphalecele surgeries have you assisted in?
- 2. One was a newborn, one was around one year old. Sometimes the opening is so large, that they can not operate right away, they have to wait until the child is older for there to be enough room to put all of the organs back in place. He has seen several that havent made it. :(

I was in a wreck when I was around 17 weeks, could that have caused this problem?
- No we do not believe that trauma can cause omphaleceles.

After McKinley is born, when will the surgery be done?
-Depending on if there are other conditions that need to be taken care of first, will depend on when her surgery for the omphalecele will be. It normally does not have to be an emergency surgery because it is covered by the thin "skin".. so it is protected. However, there are times that this can rupture, in which case, things will have to be taken care of more quickly. IF, McKinley is born and has no other issues other than the omphalecele, the surgery should be done within the first couple of days.

Will we be able to hold McKinley before surgery?
-Again, it will depend on what all else is going on. But, if she is stable, we should be able to hold her. If she has breathing tubes, it could make it more difficult for us.

Normally, what happens during this type of surgery?
- They will take the sac (skin) off, they do something with the muscle and put the organs back in place. Sometimes this has to be done through several surgeries. Again, this will depend on the size of the omphalecele. Normally with small ones, like we are anticipating McKinley's to be, it can be done in one surgery.

What is the length of the hospital stay?
-It will depend on the severity of the surgery. But, she will need to be able to eat and go to the bathroom well before they will discharge her. Breast milk is easiest for babies to digest in general, so it will be important for me to pump to get things working quicker for McKinley. She could go home as early as 2 weeks, to months of hospital stay.

What complications can occur, most often during or after surgery?
-Bowel obstruction, heart issues, and kidney issues

What if any are they typical long term problems that can arise due to omphalecele surgery?
- None from the omphalecele surgery in itself. Most problems arise from the other issues.

When will we be able to see her after surgery? How long do we wait? Is there a recovery room, does she go straight to NICU?
-This will depend on the severity of the surgery. However, we can normally see our baby about 30-45 minutes after surgery.

Rules in NICU? Visitors? Holding after surgery?
- 2 visitors at a time.. meaning me and Craig, me and my mom, Craig and his brother, etc. The holding will depend on breathing tubes, stability, etc.

Will Dr. Letton be present for the entire surgery? What role will residents/fellows have?
-Dr. Letton will be present for the entire surgery. Normally in his surgeries, he has one of his fellows. However, because McKinley's diagnosis is so rare, both fellows will probably be in her surgery. Residents may also be observing. But will not be participating.

Who will do McKinley's anesthesia? Will an anesthesia attending be present during the entire surgery?
-All anesthesiologists at Childrens are pediatric anesthesiologists (very specialized). A anesthesia staffer will be with McKinley as she is going to sleep and waking up. If she is stable, the anesthesia staffer may have to start another surgery.. but a nurse specifically for anesthesia will be with McKinley the ENTIRE time.

How many omphalaceles has Dr. Letton seen and repaired?
-He has seen many, but in his 30 years of surgery.. he has operated on at least 30 omphaleceles (which for the statistics.. is a good number)

Do you have any suggestions for us as the parents in how to best prepare for these upcoming challenges, besides prayer
-He said that is probably the best option.

As you can see.. there are SO. MANY. unknowns at this point. We are doing everything we can do to prepare by ultrasound.. but there are just so many things that will be determined after she is born. Again, overwhelming.

I know the fact that Dr. Letton has operated on 30, doesnt sound like much... but when you think that 1 out of 10,000 pregnancies have this diagnosis.. it really IS good.

I am looking forward to my phone conversation with Letton, but believe that we are in good hands.

Please keep praying.


Jere and Cara said...


I feel so out of the loop. i am praying...but what is going on? You guys are totally being lifted up in our prayers!

calillie said...

Reading your blog and praying for you guys!! You are in good hands (God's wonderful, loving, sustaining hands!!).

Leslie said...

Wow. Sounds like these guys know their stuff. I am so thankful to live in a day where there are people trained to do amazing things like this! Thanks for keeping us posted on all the little details...I read every last bit :)

Missy said...

We are totally praying for her, and you guys. And we will continue to do so!

Kendra said...

What a great list of questions. You and Craig are doing such wonderful preparations for McKinley, it's easy to see why God placed her with you. Praying blessing and peace for all of you and continued strength in the days and months ahead.

Anonymous said...

Love you, friend.

Erin said...

Read it all, and I think it sounds like they have a good game plan for your little lady. That must be comforting, at least a little. Praying for her and you!

Anonymous said...

Danielle, I just found your blog. Thanks so much for the update. We are praying fervently for your precious family. The Lord has gone before you and NOTHING surprises HIM! Much love and prayers, Shawna Nuthman

piper. said...

this is such an intense time for y'all - i am so sorry that you're having to go through all of this, but i know everything is going to work out. i will continue to pray for you guys and look for updates that everything is going in a positive direction!