Neurosurgery Follow up Appointment

We had a follow up appointment scheduled with Morgan's neurosurgeon today.  I didn't really know what to expect from this appointment because she didn't have scans or MRI planned - just an appointment with the surgeon and his staff. 

I think this was the first doctor appointment ever that Morgan did not cry at :).  She has been in a particularly spirited mood lately and thankfully no episodes like we saw last fall for several months!  We spoke about her Gillette Children's rehabilitation appointment and if she would be a candidate for Botox injections - which can help treat spasticity (muscle stiffness) to help with gross motor.  After examination of her legs, feet, hands and arms, she does have some tightness on her right side but not enough to warrant Botox he thought. He said just continue to work with her, encourage her to use her walker and be on her feet as much as possible.  Again reassurance she will walk some day soon.  We also talked about how sometimes she seems to take a while to recover from normal toddler stumbles...there have been occasions when she falls over she gets sleepy and wants to lay down for a half hour or longer until she seems to feel better.  Apparently it is very difficult and rare to cause a shunt malfunction from impact - if anything it might just cause a bruise from impact.  Hydrocephalus kids are more susceptible to concussion related behavior and he just said to monitor it and as long as it doesn't extend to several hours then no reason to be concerned. Other than that, just conversation around her progress and therapies and he thought she was doing great!  So hoping no reason to go in for scans until this fall again. 

This was the second time we have seen this new surgeon and we were hesitant to make a switch given her complicated surgical past.  I feel like I have been waiting for some sort of direction but I left her appointment feeling confident that we made the right decision. Was very refreshing to have a team of nurses and the surgeon sit with us, carefully watch and examine Morgan and feel like they legitimately cared for not only the status of her shunts but her general well being and progress.  Its difficult with Hydrocephalus to research and find a surgeon and medical team that "fits" when often the need is an emergency situation but I think it was important for us (and most importantly Morgan) and would be my recommendation to other patients and parents.  This is a condition that they will live with forever so find a doctor/surgeon that you are comfortable and can communicate with!

Hydrocephalus Families

A friend of ours connected us to another family who has a son with hydrocephalus and they live in the same city.  A fundraising event brought us to meet them which I am eager to help out with - so nice and reassuring to see a this amazing boy who is several years older than Morgan doing so well and he also has 2 shunts.  We met his family and since I have only spoken with a handful of other hydrocephalus parents or people I was interested to hear their situation and his medical and surgical past. 

We were talking for a bit and then I asked his mother when was his last shunt revision.  Immediately after the words came out of my mouth I realized this was probably the worst question I could have asked...I watched her sort of freeze up and then look for a piece of wood to knock on before she answered. Ultimately I don't think she ever answered and I didn't want her to.  I realized that this is exactly what brought us together to raise awareness and money for hydrocephalus treatments.  With Hydrocephalus and shunts, its not about how long a shunt lasts its about the fact that it can stop working at any time.  Our kids might outgrow the coiled up tubing in their stomach, the valve might break, a cyst or scar tissue might form at the end of the tubing, they could get an infection or maybe 1 of their 2 shunts just stops working.  You live with this constant fear, not knowing if you should travel away from your neurosurgeon, over analyzing everything your child does (or doesn't do) and how they are acting, and you carry a disc in your diaper bag with your child's brain scans on it "just in case".  We share this feeling that probably most people will never understand and I never wish upon another parent.  We both wake up everyday and pray that today will not be the day that we are frantically running our sick, lifeless child into the emergency room for another shunt revision.