Friday, February 15, 2013

One nervous momma

Admire that hair!
We finally heard back from Dr C this morning. It has been determined by St Jude's that Brayden does in fact need to have a biopsy. We were given the choice to stay here and have the surgery or go to directly to St Jude's in Memphis for the surgery. Dr C and I decided that surgery will take place here, where our family is, and where Brayden and I will be surrounded by our wonderful support system. This way he will also be able to recover in his own crib and play where he is comfortable in familiar surroundings. This way I can also continue to work and not take more FMLA than really needed.
The OR has been booked for next Friday in the late afternoon. Dr C will be in the OR with Brayden but will not be doing the surgery. A neurosurgeon that did his fellowship at St Jude's (that I have never met) will be obtaining this biopsy. I trust Dr C's decision to let someone with more experience with this type of surgery be the one to cut, and I am grateful that he can recognize that. The incision will be somewhere around his hairline (say goodbye to that hair again). They will guide a scope through the skull (I am guessing there will probably be a drill involved), and go through the white matter into his right ventricle. Once they enter the ventricle they should be able to get a good look at the tumor wall as well as be able to take a biopsy without causing damage. Obviously there are risks with any surgery, but at least we know he does okay with anesthesia. The biggest risks are infection, bleeding, and of course swelling but Dr C said the risks should be minimal with this type of approach. This is where the hydrocephalus is doing something good because if his ventricles weren't chronically enlarged this approach would not be possible. Most kids with tumors in this location that require biopsies have blind biopsies done, so I am grateful we are not in that situation.  Brayden will stay in the pediatric ICU following the surgery for "a couple days" depending on how he does. I love those super descriptive words doctors use.....
While I have mixed emotions about this decision, I do feel that it is the right decision. From a mothers perspective, I need to know that every time I hold him down to be stuck or drag him to another appointment and make him sit quietly in a waiting room for an hour, that there is a true purpose. In my heart I know that the true purpose is to buy us more time with Brayden and that is a really difficult concept because I want there to be as much "fun" time as possible. Knowing that, I don't want to waste valuable time with a treatment that won't do anything for us, and getting the biopsy should help us avoid that.
I want to thank my friends and family for being there for us during this very difficult time. I know things are only going to get harder from this point forward, and we appreciate all the support! I also want to thank my coworkers for being understanding and willing to trade shifts with me so I don't have to take time off to go to appointments and so I can be with him during his upcoming ICU stay.

1 comment:

  1. Sending prayers, Read your blog Julie, as tears rolled down my cheeks. Lifting Brayden and the family to the Lord in prayer . Heard about Brayden's journey through Melanie Nolting in our prayer tree on FB. God Bless you all and give you strength as you travel this journey. Praying for a complete healing .