November 10, 2009

Oh what a day!

Branden and I both noticed that Annabelle's fontanel seemed to be "bulging" a bit, which is a drastic difference from her normal sunken in post surgery fontanel. Of course we were concerned since a bulging fontanel is typically indicative of a non-working shunt. It's been just about 6 weeks since her shunt revision and the the thought of going back in for surgery just breaks our hearts.

I knew that I needed to call Dr. Javahery, her Neurosurgeon and let him know. His immediate response this morning was to send her for a CT Scan. Although, I may complain (a lot) about how much we pay for our health coverage, I must admit that we do have good coverage for the most part. We are very lucky that when a Dr. believes that a procedure is necessary we always get approval and typically within a very reasonable amount of time. I have read stories from other moms in my Spina Bifida group that sometimes have to wait weeks to get an MRI or a CT Scan for their child. Waiting to know if your child is going to be okay or if they will need surgery is a very stressful thing and each day you are left worrying most be horrible. Thankfully our Dr. was able to arrange for Annabelle to get her CT scan today. We had to wait a little more than an hour because we were an "add on" to the schedule but we got it. Annabelle was very patient the whole time. She was actually cooing and just being a sweetie.

I don't think I will EVER get comfortable seeing Annabelle strapped down on a table with her head placed between cushions to keep it straight. Even though I knew she wasn't in any pain it was still very difficult to witness. However, in typical Annabelle style she was calm and composed and got through it perfectly or should I say GRACEfully :-) After the CT Scan we headed over to the doctor's office to discuss the results and have him take a look at Annabelle.

So, the results, well that's the tricky part. Her ventricles look good ~ in comparison to how they looked before the last revision. Although she felt a bit more full in the fontanel and pulseatile (his word) the shunt does appear to be working. Obviously, this is good news, right? Well, I don't think it's that cut and dry and truly either does the doctor. It's really going to be a bit of wait and see right now. If her heard circumference grows or her fontanel becomes more full or bulgy than we will need to have another CT Scan which will be compared to the one done today. This is exactly what happened last time. She had a CT Scan, all looked good. Three weeks later we were back having another CT Scan and subsequently having a shunt revision the following day.

So for now the decision is to move forward as normal. We have decided to not sit and worry ~ it's a waste of precious time and energy. Secretly I worry, but I am trying hard not to. My mommy instincts tell me that the shunt is either not working or at least not working optimally. However, until we know more there really isn't anything we can do.

Thank you to those who sent Annabelle and I prayers and positive thoughts today. It was a long day and I appreciated knowing that you were all right there with me. We left the doctor's office with 20 minutes to get ourselves over to Annabelle's physical therapy appointment at 2pm. Amazingly she did AWESOME! I had totally prepped the PT with how much Annabelle had been through and that we left the house at 10:30, excuse...but to both of our surprise she tolerated 50 minutes of PT.

That little girl is so strong and so inspiring. She brings us so much joy each day. We will certainly keep everyone updated on any changes in Annabelle's condition.

No comments:

Post a Comment