November has come to mean EEGs and December has come to mean brain scans.
I used to think that Parker's hydrocephaly was the least of our worries. And admittedly, it is not at the top of my list. But I sort of just thought it was the most black and white of all of his problems. Sort of like a broken bone. It's broken, needs to be re-set and then it's pretty much good after that. Until it malfunctions or gets infected or something. Then we'd have to deal with it at that point...but in the end, this may not actually be the case.
So off we went to Necker to get his annual CT cerebral scan yesterday & visit with his beloved neurosurgeon. It's frankly bizarre how much impact she and her team have had on my son's life and our family, whereas for her, its " just another day at the office". I ran into one of the neuro-surgical doctors in the stairwell while exiting, and I was happy to see him & report of Parker's progress. And honestly, he couldn't pick us out of a crowd at Disney, not to mention Necker. It's fine, but still, weird. Imagine how many other babies he has operated on in the past 2 1/2 years since PJ. And I think it's great that we just blend into the crowd--that means its not marked in his memory as being something extraordinarily horrific or difficult. Just standard care post-meningitis. Right? But still, again, bizarre.
But every. single. time. I go to Necker's radiology department, I can't escape there without being ripped wide open with sorrow and emotions that last. It takes me a few days to recover. I slow down, my heart breaks. I just keep seeing images of moms & dads in tears, holding babies with abnormalities, and children in comas doing emergency procedures. A little girl about 6 years old was brought in for an emergency scan on a ventilator, and I walked by her repeatedly, her parents, and accompanying doctor and nurse in masks before me & Peej were sent back to the waiting room awaiting our results. I could feel the stress of all of the secretaries, techs, nurses, doctors for the next hour while they awaited those results for that little girl and her family. And we awaited the results of Parker's routine brain scan. And I think how on earth those people work there is amazing. And they are all angels helping these little children. I am so grateful for them, and pray the Lord will bless them in their service. And bless those they come in contact with hour after hour-day and night-day after day after day.
Lucky for us, we actually get to leave there. For the space of a year, before doing it again. And yet seeing those emotional and worried parents takes me right back to the time we rolled Parker with his increased intracranial pressure in his iron crib with peeling paint through the basement of Necker to get to his scan on a portable ventilator. And every time we met a crack on the floor, we lifted his crib ever so gently amongst the dust and pipes of the basement, and continued onward. And there was silence in that long dark, dirty hallway, except for the loud beating of my heart in my throat, and my uneven breathing- and the continued beep, beep, beeping of Parker's portable ventilator....
And each time Parker does his scan, I am honestly surprised that he still has hydrocephaly. Physically as well as Spiritually. I clearly do not understand the body and how it works. Nor the Lord and His mysteries, and creations. I expect all of the water (or cerebral spinal fluid) in his brain to have re-absorbed by now. And can't figure out why he still has it if he has a drain in there to drain it...does he need a bigger valve to drain it? Isn't it immediate drainage? Like a funnel? Is his brain actually happy with this amount of fluid in the 2 ventricles and frontal lobes (more on the right side?), and THAT is why it retains it? ....and why when I pray for it to be gone, does it still linger? Do I need more faith?
I have learned some time ago not to ask the question WHY? It is inutile, but still, it creeps up from time to time into my consciousness.
I know I have enough faith for him to be healed of hydrocephaly. But do I have enough faith to understand why it is not yet gone? Is this all just part of God's plan for Peej--and do I just need to accept that, or fight for him to get better, be different, be better than he already is....? I feel that it's a fine line between acceptance and indifference. OF COURSE I am not indifferent, but to quietly accept God's will sometimes borders on defeat for me. And I am not easily defeated. I do not want to be defeated.
And if he still has it---(WHICH HE DOES), what are the long term effects on his growth & development & learning? Are the problems he is having now in deaf school related to that right frontal lobe pocket of liquid ? Or just hydrocephaly in his ventricles? Or does he just still need some time to catch up from those missed months of illness? They are asking if we've done a vision/neuro test on him to see if the portion of his brain that controls vision is in fact damaged...if he has a hard time seeing objects on a piece of paper, and in 3-D for example, and realizing that they represent the same thing. And how could it be that my gorgeous niece (also with hydrocephaly and a shunt that has not functioned for 3 years) is not having changes of consciousness, nausea, vomiting, coma, difficulties learning, or even worse, death? These are the risk factors associated with hydrocephaly....does she really need a shunt afterall? And since she is clearly old enough to remember another surgery (unlike Parker who I think will thankfully not remember any of these surgeries), is it worth all of her suffering and pain? Will it better her life? And can we all just function fine with some amount of hydrocephaly, as long as its not putting pressure on our brains?
Those are my questions today.
But here is the official scoop:
1-Dr. P told me yesterday that she didn't even need to look at the scan after seeing how Parker walked, talked, and interacted with us. She said he was fantastic. (I already knew that but its nice to hear to from a neurosurgeon from time to time)
2- She also told me the longer we got away from the surgery (now its 2 1/2 yrs), the less likely it is he will need a repair--ie. it gets kinked or something because he was so small when it was placed and now he is getting bigger and his brain is getting bigger, etc, that he'd need an emergency repair neurosurgery to fix it up again. No biggie. Still could happen, 50% chance. OK.
3-She said we'd do another scan in one year, then if it's good, start to space it out to every 2 years, etc.
4-She concurred with our neurologist who wants to start taking him off anti-epileptic drugs. She said usually after a patient has 2 consecutive normal EEG's, it is acceptable protocol to start weaning them & see how they do.
5-She wanted to see him run. And she did.
6-The scan still showed to me significant water space in both ventricles as well as both frontal lobes, more in the right lobe. But the good news is that the shunt is still in place. And still working.
7-For her, the scan showed a slight decrease in liquid when compared to last year's, and the best part is the brain does not seem to be suffering from the fluid--that the curvatures are still there, symbolizing there is not an inappropriate amount of pressure anywhere.
So, in essence, it's good. Upward and onward we go.
And thank the Lord for our blessings.
And we think of Christ at this time of year, and the Plan of Salvation and being with our beloved family & extended family enjoying them and our common values and love and strength we get from them, the teachings they have taught us and continue to to teach us.
And we recuperate from our many holiday parties, Hannah's baptism, losing our fantastic nanny (We miss you, Amber!), and prepare for Christmas Eve and Christmas.
And prepare for our surprise trip for our children and both sets of grandparents. We leave the 25th and return the 1st.
Life is good. We are oh-so-grateful.
God bless you all and keep you. And many continued thanks for your prayers--present and past for Parker, and anyone else who suffers. I know they are not in vain. I know that God hears and answers prayers. Sometimes it is not immediate, and it is not always the way we expect, but I know that He does. And I trust in Him.
Merry Christmas to all, and all of God's blessings for the year to come! Bring on 2012!
