Thursday, February 21, 2013

Light at the end of the tunnel?

Long time no post! I can't say that's a bad thing! Where to start? Frankie is doing exceptional!

Today, Joe and I took him for a surgery follow up appointment. We had a lot to discuss with Dr. Keller (pediatric surgeon). Joe and I both wanted to express our concerns (some things we did not agree on. Typical in life.) about Frankie's belly. Overall, his belly is doing great. The concerns lied within the wrapping of his belly and his feeding tube.

-Will the wrapping cause scoliosis?
-Will is deform his rib cage?
-Feeding tube makes him gag.
-Pulls tube out.
-Tape tears up his skin.

The list could go on and on.

Joe, more so than I, is ready to start the process of getting little Frankie all put back together. Of course, I want my child to be "normal" and be finished with his surgeries but the thought of it makes me absolutely sick. After talking with the doctor today, I feel better. Not completely, but I feel as if this process is ready to start. Here is what the doctor said...

He is ready to get the ball rolling on putting Frankie's organs inside. We have to have cardiology's approval first. We will be seeing cardiology on May 14th and we will see surgery that day, too. If cardiology gives the "all clear" on Frankie's heart and lungs, then Dr. Keller wants to get him on the books for June. His first repair, possibly his only repair, but his first for sure.
What exactly will be done? Dr, Keller will open up Frankie's O and lay things where they go for an O baby. Hopefully there is enough of his own muscles there (he felt a lot of muscle today which is nice), if not, they will use a piece of mesh to hold them together. Frankie has some good skin grown up on his O and they will use that when closing him up on the outside. There is a good chance that they will use a small piece of alloderm also since he doesn't have a ton of the good skin to use. Alloderm is collagen sheet obtained from human organ donors. It consists of the deepest layers of skin and contains no living cells. This is commonly used among the O babies that I've seen. While he is in there, Dr. Keller will try and put a g-tube in as well. A g-tube is a tube inserted through the abdomen that delivers nutrition directly to the stomach. We are really hoping that this can be done at the same time so that Frankie's face, throat and nose will be free of the ng tube and hopefully it will promote better eating. If he is unable to put the g-tube in, it will be placed a few months after the repair surgery. Frankie is currently still getting 75% of his nutrition via tube and the other 25% he eats orally or not at all. Some days are better than others.

There is no exact plan of what will take place or how things will be placed until the doctor gets in there and starts on things. Each O case is just so different and complex. I am happy to know that the doctor thinks that Frankie looks great and is ready to begin this. I just didn't want to rush in to something this serious and not have him be ready. Frankie will be in the hospital for awhile, not sure on the time frame. My guess is a couple weeks or so. Hopefully he will only be on the ventilator and need that breathing assistance for 24 hours or less. It all depends on how his lungs and heart react, which I'm sure will be fine since his heart is repaired. After surgery is complete he will either be in the PICU (pediatric ICU) or back in the CICU (Cardiac ICU). The only reason he would go to the CICU is if the cardiologist becomes concerned with his heart and lungs. Either way, surgeries team will come see Frankie where ever he is and take great care of him as usual.

Joe is really pumped to get this process going. When the doctor finished talking I told him I felt like I was going to throw up. This little man is my whole life and I just get frightened of all the "what if's" and the possibilities of things going wrong. I know the likely hood is slim but I am his mama. It's what I do! Thankfully, this child is incredibly strong and has already proven that to us many of times. I know that he will breeze through this, too.

I believe that is all for now. Feel free to ask any questions you'd like. I tried to summarize today's appointment to the best of my ability but I could have missed some things. A lot was said. Love to you all and prayers to Frankie for continuous strength, good health and growth to get him through this repair in the summer!