Thursday, January 24, 2013

More waiting and more tests

Today was our very much anticipated appointment with Dr. C, neurosurgeon. I have been waiting as patiently as possible for this appointment, and I thought we had everything we needed for this appointment. Apparently I couldn't have been more wrong.....

How many toys does it take to entertain a 1 year old in a waiting room/exam room for 2 1/2 hours?

This many toys plus a mom, dad, granma, and granpa
Unfortunately this appointment was not what I was hoping for, as we are still searching for a diagnosis at this point. Ultimately all we learned today is that  Brayden has more sticks, and breathing tubes in his very near future. His previous scans are currently being submitted to a pediatric neuroradiologist in order to attempt to determine a diagnosis, if that's even possible. He will also be having another MRI, only this one will be with something called spectroscopy, this coming Tuesday. He will be awarded breathing tube #5 and he will be placed under anesthesia again. Third time in 30 days is a charm right? While he is under anesthesia his reservoir in his brain that extends into his ventricles will be accessed in order to draw off some spinal fluid. Dr C is not sure it will still work as it has not been accessed in 10ish months. If it doesn't work than Brayden will have a needle inserted into his spine to obtain the required fluid. The fluid will then be tested for an array of things that could also possibly give us a diagnosis. At this point, Dr. C says we should potentially be very concerned, although he also says it could be something that could resolve on its own........ very descriptive.

The only thing Dr. C said for sure is that we should know something in 3 ish weeks, whether its going to be good or bad he can't tell us. If we don't have an answer by then, a biopsy will be completed. Based on our discussion today, a biopsy is extremely risky based on the location of this mass and doing that is a last resort. This also means that Brayden is not a candidate for a surgery to remove this mass.

After we determine what this thing in, we will be referred to either neurology or oncology. That transition will be hard for us because we are currently surrounded by familiar faces and people we trust that helped our family stay intact during our NICU experience.

Tomorrow Brayden I will be headed back to Dr. P for our pre anesthesia physical. Apparently this hospital doesn't care that he has had anesthesia twice this month already, they said those don't count. I can only imagine how tired he is of sitting in waiting rooms, because I know how irritated I myself am becoming. I am sure the coming weeks are going to be extremely challenging for our family, and we appreciate all the support we have received. I know that I myself am quickly approaching my breaking point, and I am not sure how many more tough mommy faces/smiles I can muster up.  Brayden is not having any trouble putting those smiles on so I guess I should start taking lessons from him!

1 comment:

  1. Julie,
    I just read through each of your entries and I have to say, I cannot imagine what you and Bret are going through. Please know your family & baby Brayden are in our thoughts and prayers and I pray for positive news/test results for him. It is amazing how strong children can be, happy and playing and smiling and know no difference. You are a strong mommy...hang in there!
    Melanie Nolting