Bad News Bears...

As if last week was not hard enough we have just returned from the Neurosurgeon and Cameron will require another brain surgery. The ventricles continue to grow and fluid continues to build up. This is not at all what we were expecting as his fontanel seemed ok, nor wanted to hear. We always knew this was a possibility but I guess were hoping we'd get lucky.
Surgery will either be this Friday the 11th or next Thursday. Dr. Alden needs to consult with Dr. Reynolds regarding the diaphragm as that could pose an issue during surgery.
Depending on how things look when they go in they may try the same procedure again, but more than likley he will get a shunt. With the shunt the fluid drains into the abdomen , thus the need for consult with Dr. Reynolds as this fluid could also push "things" up in the diaphragm area which would exacerbate that issue. I have a feeling Cameron will ultimately end up with a shunt - which is just not what we want at all. We know that this his how most cases of Hydrocephalus are treated, but with the man made object being placed in his head it increases the risk for infection and could mean multiple surgeries in the future to repair malfunctions. You hear stories about children who have no shunt revisions and those that have 20 in a month. So it's such an crap shoot.
As we were in the waiting area prior to the ultrasound and young girl probably 7 years old was oohing and ahhing over Cameron and how cute and little he was, she was just in awe of him. He then began to cry so I had to take him out of his seat and when I picked him up and held him she said "his head is so big"..."I can't believe you can see all the veins in his head" ...her mother quickly said "you were like that too"... to make me feel better and ushered her away. In many ways I felt I had gotten the diagnosis that things were not good right then and there. Children are truly the most honest and perceptive people sometimes. She's right, he does have a big head - in fact the size of a 4month old and gestationally he's not even 4 weeks yet. And the veins being more prominent is quite commonem in children with Hydro.

So we will wait to hear tomorrow about the surgery date. One good note we did meet with the Dr from Kidney Diseases yesterday and he does have some mild swelling but not something they are overly concerned about. So long as he does not get an infection we will see them again at 1 year of age. Obviously when he spikes a fever we need to be extra cautious and he can't play contact sports but other than that it was an optimistic visit.
xoxo mom and dad