The Neurosurgeon visit

Good morning all!

I really liked Dr. Mapstone the pediatric neurosurgeon we met with yesterday. He was very kind but I sensed that he was very confused as to "why" Daniel. One of his early questions was " have you adopted him yet?" with a sort of gentle "can you get out of it?" implied. I shared with him a little bit about how we came together with Daniel (that I was a follower of Jesus,  ) and how I had seen changes and lessened deterioration since we began to pray for him and make plans to bring him home. We were very honest with each other about Daniel in terms of expectations now and in the future. I felt like he respected me and didn't talk down to me .

That said, the results of last week's MRI were more stunning than I had prepared myself for. I "thought" I had readied myself for a suggestion that we do nothing surgically, but I was not as readied as I had hoped. I did not cry while we were with the doctor: I had too many questions to ask and to much to listen to and prepare to research later.

Daniel has very, very little actual brain. (it is unknown whether he had brain matter and lost it to fluid, or if he was born microcephalic (little brain) AND hydrocephalic) Instead of the approximately 100 ml of fluid which should be in his 2 year old head, he has about 2000 ml. Compare the volume of 1/3 cup measure to a 2 litre soda bottle: what your child has as opposed to what Daniel has.

Doing no surgery will not have much of a negative impact the doctor thought, because obviously he is draining off some of the fluid in his head. A total blockage would result in a much larger head, more brain cell death... ( Essentially: since there isn't much brain material there isn't much more cell death to occur that would not result in death itself.) Daniel does not seem to be in contant pain as he was last year and he is not totally irritated by tactile stimulation ( these are classic signs of hydrocephaly on the move)

Surgery will reduce the amount of fluid in Daniel's head, which will reduce the size of his head making him a bit more proportional, will make him more comfortable certainly, but will more than likely not cause any restoration of function for him. Dr Mapstone said that he has done brain surgery long enough to know that there are no real answers to that "will my child improve?" question before doing any surgery, and often even after. Because the fluid is so dense in Daniel's had he could not see much of anything...except the absence of brain material. As I said, there "could possibly" be increased brain function after surgery, but it is absolutely unknown IF or HOW MUCH.

He gave us several options and since hydrocephaly is fairly new to me I didn't know there were options beside shunt surgery.

Our three options are

1) nothing

2) shunt

3) choroid plexectomy

4) endoscopic third ventriculoscopy ( the subjects of 1-4 I am doing MUCH READING about right now!)

I knew that the shunt option carried with it a lot of life long implications, risks of infection, need for replacement, etc etc... as in: every time Daniel might have a fever of any sort its a trip to the ER because that fever could be shunt /brain related and not just a cold or virus. Cerebro-spinal fluid checks are the only way to diagnose or rule out a brain infection with or without a "plain infection" but that is life with a patient with a shunt.

Another option is to remove surgically a choroid plexus which is the little section in the brain which makes the fluid. As I understand this, there are more than one of these plexuses (plexi??) in the brain so fluid would still be made, it has to be there, but would lessen the amounts produced and hopefully create a more normal brain environment. Its a riskier surgery than the shunt  but is usually a one time affair. Because shunts are "easier" many neuro surgeons prefer them to the older methods in #3 and #4, but I read a recently revised statement from the College of Pedi-Neuro-surgeons stating that the #3 and #4 options are NOT obsolete or uncalled as previously stated, for but that in some cases ARE necessary and beneficial. One statement I read from a year ago was testimony to how intricate our brains are and how far science still has to go in knowing how to treat or even address them...in that science is still "incredibly challenged" by how to treat brain issues.

Charlie and I have not had a chance to talk in depth about all of this, but I think we are leaning toward the choroid plexectomy. IF Daniel were cognizant and could tell us if he had a headache or ear ache etc, we'd feel better about the shunt. As with little Abby Riggs who sees the ER and so many doctors so often even when she CAN explain her symptoms, Daniel could not tell us anything that would indicate shunt related issue vs "common issue and we would need to rely upon hopsital visits and tests.

IF the choroid plexectomy were successful, Daniel would  likely not need surgery again, and risk of infection would be minimalized because his incision sites would be healed. AND, since we are hoping to have a feeding tube inserted, that very process which would make feeding much less traumatic could be a source of infection with a shunt present which could "double whammey" everything.

There would be no way to do brain and feeding tube surgery simultaneously either. Brain is SO SO STERILE and any "gut surgery" is considered "Dirty surgery" because the GI tract is not sterile. (Sterile procedures all the way of course, but I understand what he meant)

Dr Mapstone told me to go home , take a few days talk to Charlie and call him regardless of what we decided to do, even if we decided against surgery at all.  We should be able to have brain surgery scheduled within a week or so from when we talk to Dr Mapstone again. He also suggested that a feeding tube was a good idea but we needed to decide which we wanted first: brain surgery or feeding tube. IF we do the feeding tube first, he needs to be at least a month healed up before brain surgery takes place  to minimalize risk of infectons. Ditto the other direction if we do brain surgery first. SO, that begs the questions Do we aim for increased brain function and hope that swallow reflex is present and returns so we don't NEED feeding tube

OR

Do we do the feeding tube to make life a bit more pleasant and postpone brain surgery ?

Much matter for prayer.

How ironic that after each of our babies were born, we praised God that they were healthy and didn't have.......................

pretty much everything that God gave us in one Daniel-ized package!!!