Wednesday, March 17, 2010

About W (or Hospitalizations Explained)

Note: Please go here to read about our BIG news, and then cast your vote. And, I didn't plan this at all, but I am posting this on the second anniversary of W's first surgery.

For quite some time, I've wanted to explain about my younger son's condition, but I also wanted to be sure the post was thoughtful and genuine. So, here we go. W has obstructive hydrocephalus. Some of you are nodding, but some of you may be thinking obstructive what? Hydrocephalus literally means water on the brain, which is inaccurate, it's not water really, it's cerebral spinal fluid (CSF). CSF cycles through everyone's brain, but for W, it was unable to pass out of his brain quickly enough. So, at his six month check up, the pediatrician recommended a scan of W's brain, because instead of a curve, W's head circumference was just going straight up on the growth chart. (One of the reasons the doctors measure babies' heads). Never would I have thought that I would be praying so hard for my baby to just have a big head. The pediatrician called me the day of the scan (never a good sign, bad news is fleet of foot) and explained that there was excess fluid. We would need to see a neurosurgeon and have an MRI. I foolishly asked if he would tell me what they thought was wrong. Never ask, let them tell you what you need to know. He told us he thought W had a condition called Dandy Walker Syndrome. I knew better than to Google it, but I did it anyway. When we saw the neurosurgeon's nurse practitioner, she also discussed Dandy Walker. Here's where it pays to have more than one person in the room (besides the patient) when talking with medical professionals. I heard, "W has Dandy Walker." My husband heard, "W may have Dandy Walker." We had the MRI, which required having W put under with anesthesia. They gave us a CD of the MRI films and off we headed straight to the neurosurgeon's. The surgeon looked at the films and, praise God, it was not Dandy Walker. W has an arachnoid cyst which causes his obstructive hydrocephalus. Arachnoid? Like arachnophobia? Yes, actually everyone has an arachnoid membrane in their brain, named this because it looks like a spider's web. W has a cyst in his arachnoid membrane, and the cyst does not allow the CSF to leave his brain as quickly as it should. So, his head was growing bigger quickly to accommodate the excess fluid. The neurosurgeon scheduled W for surgery to place two shunts (basically tubing) in his brain as well as placing a valve behind one ear that allows the fluid to flow out of his brain and into his abdomen. The valve is controlled by a magnet and allows the medical folks to adjust the pressure (or how quickly the fluid is flowing out). So all of this is under the skin and, unless you're really looking behind his ear or at his neck, not noticeable.

So, of course, we were scared, angry, full of questions for the doctors, the universe, God. Some of you know my father died of brain cancer when I was expecting my oldest son. Now, here I was three years later going to the same group of physicians about my younger son. It didn't seem fair, and (I will be honest here) it still doesn't. Yes, I know there are things that are so much worse, but that thought doesn't help me each and every time I walk into that office.

The surgery was quick and successful. We stayed in the hospital only one night. W had gross motor skill delays (some other minor delays in other areas, but gross motor was the big one) because his head was heavier than a baby who did not have this problem. He crawled later and hated tummy time with a passion. Thanks be to God, he has pretty much caught up now. He still isn't able to go up and down all stairs on his own, but part of that is due to exposure as we don't have stairs in our home. He goes to preschool and seems to be doing well there. He jumps on his bed, gets rowdy, he's a boy. What does it mean for him in the future? No contact sports, future surgeries (to lengthen the tubing as he grows, the "hardware" won't last forever, etc.) The doctors say he's fine to fly, swim. I limit his play with magnetic toys (not easy in a house full of magnetic Thomas trains, but thankfully, W has done very well with the "little boys with shunts can't play with magnets" rule and H understands he can only play with magnetics when W is napping). The doctors say it's unlikely the magnets on the toy Thomas trains could change his valve setting (thus changing the pressure in his brain), but I took the trains to the neurosurgeon and he said, "it's possible." You can imagine, that's all I needed to hear. We also teach him to use the other ear (the one without the valve behind it) to use the phone as cell phones can have magnets in them and some can alter the setting.

You notice I use the term the doctors "say" quite a bit. Let me explain why. Most folks we know who have experience with shunts have the shunt placed and don't look back for years. W's shunt was placed in March 2008. In November 2008, W vomited off and on for a week, the pediatrician at first thought it was a virus, but then after about a week, W became very lethargic and could not keep anything down, not even fluids. The neurosurgeon's office couldn't see us, so we hightailed it to the pediatrician's who immediately sent us to the emergency room. After a scan and x-rays of his abdomen, the doctors immediately saw that the tubing that the CSF flows through had broken at W's neck. More surgery, but thankfully not brain surgery really, just reattaching the tubing. Tubing breaking is rare, but that is the most common spot for it to break. (Crazy Christmas #1 - the surgery was early December).

Now, fast forward to December 23, 2009, W comes to me after playing completely normally a minute earlier, racing around pushing dump trucks with his brother, and says, "Mommy, my tummy hurts." Within two minutes, he throws up...and my stomach turns over and clenches because I immediately think, "It's the shunt." I look at C, "Oh no," I say. He says, "We don't know it's the shunt." W throws up a few more times, and then settles down for a while. I put him on the couch to sleep with me. He wakes up around 11:30 pm and throws up, and then continues to throw up or dry heave about every hour and a half until 6:30 am. We head to the pediatrician's the next morning (Christmas Eve day). We can't see our usual pediatrician, but I am calling to make the appointment while we are driving there. It doesn't matter who we see, I know where they are going to send us. After the doctor confers with the neurosurgeon folks, we are sent to the ER. They give W IV fluids to help with dehydration and discuss tapping his shunt (involves putting a needle in his head, nuff said) since all the scans and x-rays look fine. Tapping runs the risk of introducing infection, so the doctors are going back and forth. The only other explanation is that he has a virus. He is pretty sleepy during most of this time. They prep him to do the tapping by shaving a bit of his hair and putting numbing cream on a spot on his head. The neurosurgeon on call just happens to be the doctor who performed surgery to remove as much as possible of my father's brain tumor. A great doctor, but forgive me if I really didn't want to ever see him in this setting again. Anyway, W's neurosurgeon has been paged about W, and he calls to say not to tap the shunt as it could be a stomach virus. They send us home for Christmas. Christmas day, we video the opening of presents. W is not too interested, showing a little interest in a toy, but mostly, just sitting on the couch and sleeping off and on. He throws up during the videoing. The next morning he throws up again, and we are off to the ER. We are admitted to the hospital and stay for four nights. C and I both get cold/sinus infections during our stay. The pediatric doctors still can't find anything wrong, so they want neurosurgery to tap. W's neurosurgeon still doesn't think we should tap based on more scans. They send us home, "maybe it's just a virus." A virus that lasts this long? I, by this time, am positive it's the shunt. We are home for New Year's Day, and January 2nd we are back in the hospital (this time we are a direct admit from the pediatrician's office). We stay one night, have scans and blood work and are sent home again! We are to follow up with our pediatrician and our neurosurgeon ASAP. Finally, on January 5th, we see W's neurosurgeon who says the most recent scan does show a very slight change. They tap the shunt, W is the bravest boy ever, and the neurosurgeon's nurse practitioner says something is definitely strange. We go ahead and schedule surgery but are told that if W seems better, to let them know. W is definitely better but not 100%, so we head to the hospital for surgery. We talk to W's neurosurgeon about how he is doing, and he decides not to perform surgery. Instead, we have another scan two days later. Since then, W seems fine (knock on wood). The best guess is that he had some "brain gunk" clogging the tubing or valve, and when they tapped the shunt, they also flushed it and the flushing got rid of the gunk. So that's a very long story to explain why I often use the phrasing "the doctors say." I am not doubting the doctors' abilities and knowledge. W is here because of God's grace and the oftentimes amazing acts of these doctors. My dad liked to say: there's a reason they call it practicing medicine. They are human, too. Crazy Christmas #2 ends.

When we first found out about W's condition, I was talking to a friend (HGS), and she said the kindest and best thing anyone could have said to me. I was so scared. I asked her, "How am I going to do this? (meaning take care of W) What if I can't do this?" Her response was something like this, "Of course you can do it. Who else could do it? No one is better able to take care of W." In the same vein, a wonderful lady who is halfway across the country from me sent this to me in an email: "God placed W in your home and in your heart because he equipped you to be the loving mother you are to this little boy." That email is on my refrigerator, in case I need reminding. (This wonderful lady's sister was my niece's biology teacher in March 2008, when my niece asked her teacher about W's condition, lo and behold her nephew had the same condition, caused by the same type of cyst). When I think about all that we went through with my father, I do wonder if I was somehow being prepared. When I was praying, "Why, God, why?" I did finally get an answer. There was no booming voice or burning bush, just this thought suddenly in my mind, "Your imperfection is still My perfection." (Trust me, that was God's voice, the one in my head is not that profound). I took that to mean that I should count my blessings, and W is one of God's perfect blessings. One He chose to bless me with. Don't take all that to mean that I don't get frustrated, angry, etc. I do, more often than I should. I am frightened to go out of town, to take a vacation. I struggle to treat W, and our lives with him, as normal.

So, how is he? He's wonderful, a beautiful, laughing, energetic little boy. Rough and the toughest little cookie around. Smart, funny (yes, funny, even if he maybe doesn't always mean to be), a great little brother to H. So, there you have it: the long story about W.

PS Check out the awesome Heather at The Extraordinary Ordinary and on the right hand side of her blog, go down to the "browse by category" drop down and choose The Noggin' to read and learn more about hydrocephalus (she even has an illustration to show how the tubing works).


mel said...

You made me cry. And HG is so very right, there's no one better for W to have than you. I think your frustrations and anger are totally justified, anyone would feel the same. It's not fair that you have to suffer this, especially after what you went through with your daddy. But, you have your faith and your daddy to watch and guide you. H and W and #3 are all very blessed too, with you as their mother. I do pray that you and C can finally be those parents that don't look back to the shunt for 'years' now.

I was thinking of you all last night. We watched A's birthday video from the ice cream shop. "Baby Arwen is so sweet and so cute!" W is so great! He and H both were so sweet to A, hugging on her and talking to her. Hopefully we can have a kiddo playdate when this wedding is over and the weather gets warmer!

Take care of yourself. And, my ears are always here if ever you just need to yell and vent. Much love to you!

Christy said...

Oh my goodness! I had NO idea about this whatsoever. You ARE an amazing mom - and your friend is right - who better to take care of him than you? Thank you so much for sharing this all with us, and I'm so sorry about your dad too. It isn't fair. Life isn't fair. I wish it were. I hate seeing people I know in real life, and people I know just through blogs, suffer. It tears me up inside. But you have an amazing inner strength - AND a healthy baby girl on the way! (CONGRATULATIONS!!!!) and a wonderful family around you. I'm praying for you and your son, and the rest of your clan - hope the rest of your pregnancy is easy peesy and you don't have to see the brain docs for a VERY long time!!! xoxo

Annette said...

It's taken me tooooo long to get over here and read this! Life is a bit nutty lately. That said, I'm just so glad to have come by. You, my friend, have been through so much. I'm sorry. But it's true, you are an amazing and brave Mama. Your scares with W have been awful I'm sure. I hope you guys have many years with no emergencies. This shunt stuff can be so tricky, huh? Thank you for sharing your story. It's so good to know that there's someone who completely understands.

Peace to you,

Annette said...

Oh my goodness. This is Heather (of the EO) signed in as Annette. I was helping a friend start blogging and forgot to sign her out :) I'll go do that now! Ha!