Sunday, January 29, 2012

Cone Heads Aren't Always Funny

Some things take me a while to process before I can write about them. Recently, there was one of these types of things going on.

A number of months ago, I started to notice Aviana's head was looking more cone like :o( At first, I just tilted my head in wonder, and carried on with the day. A few months later though, there was no denying, it was definitely getting worse.

As I've mentioned before, the physical manifestations hurt me the most. As her head was changing, I was already making my way through a sea of challenging days. Because she has an existing ten titanium plates, thirty-nine screws and tons of lumps, bumps and massive scars, we are very careful in styling her hair for the day. We drag the comb across her hair, rather than her head.

In doing and washing her hair, I could tell something terrible was happening. I asked Dave if he had noticed. He had, yet neither of us really wanted to truly investigate.

My uncle comes to visit and pattern every Thursday. A number of weeks ago, Roger was about to arrive. I could no longer ignore the truth that lie beneath Aviana's beautiful head of hair. The strength in examining came from knowing my uncle would soon be there to catch my fall, as he so often does.

I felt the area of concern, and honestly ~ there wasn't a bucket big enough to catch the amount of tears which followed. The area was much worse than what I had prepared myself for. She has a deep dent in her head. You guys...a portion of her head has caved in on us : ( As if that weren't bad enough, it was obvious by some super sharp edges, that one of her many plates is about to come through.

I immediately e-mailed her neurologist. He responded, and wanted me to bring her in. The day of the appointment, I repeated to myself - whatever happened, has happened, and at this point there's nothing I can do about it. What's done is done. I stayed calm throughout the appointment, even though, once again, the words falling from his mouth were unintentionally shredding my heart. At times like this, I wish I were deaf, but because I'm not, I have to endure words like these: brain dying, her pressure's not good due to the previous surgeries on her head, her shunt is contributing to her pressure problems, her bone is rescinding, one of her plates is about to come through, this only happens to a very small percentage of children like Aviana, and so on.

At first, he didn't seem to have an urgency about her situation, but after he further felt around, and discovered her head was giving way, he ordered a CT Scan. His final thoughts were - we might very well be in need of surgery within a month's time. The surgery would involve going back into our baby's head. He will either remove her existing bone and put a larger titanium plate over the questionable area, or (depending on the quality of the bone) may have to remove it altogether, and place the plate over. He also needs to remove the plate that is about to come through. Yuck! Sucks!

In order to care for Aviana, we are all forced to be robotic in nature, to a certain degree. We must simply go through the motions, emotionless. For this is one of the only ways to best survive a life like this. If it weren't for this particular defense mechanism, we would all remain a soaking wet, puddle of tears. At these appointments, I listen intently, ask my questions, and keep my emotions switched in the off position. I process exactly what he is saying, and move along as quickly as possible. It is a harsh reality to have to go through life wearing a veil of numbness. This protective covering is the only way for us to keep wading through though. While begrudging this piece of armor, I am at the same time, so thankful for it.

Anyways, I took Aviana down for her CT Scan right away. I handle all of Aviana's appointments, as Dave is at work and I can get through. As the night before the results arrived, I realized I just wasn't up for listening to more of her neurologist's painful words. Another discussion about her sinking head, in under a week, was just too much! This time, that's where I had to draw the line. I asked Dave if he could take the scheduled phone call, and he agreed.

The end results were ~ he wants to see her in a month to compare her CT Scan with her actual head again. We will be taking her in for surgery, but he wants to do everything at once. At this point, he is unsure of exactly when the procedure will take place.

The thought of her being wheeled back, and again going under the knife makes me sick. I am thankful though, that the bridge to be crossed is off in the slight distance, rather than just steps away. We welcome not thinking about it until then : )


  1. Ugh! This just sucks for you guys! I can completely and totally relate to "the veil." and honestly I'm more comfortable there. More matter-of-fact. But this is just yet another bridge you'll have to cross and I'm sure Avi will be just fine!

  2. I tell you seems like enough already. She has her beautiful head of hair just let her keep it and no more yucky surgeries.

  3. crap that might have sounded like she shouldn't have the surgery, thats obviousley not what I meant, it just seems like you all have already had to go thru so much, why more? seems like she could at lest be on the other side of the odds for once.

  4. I'm so sorry to read this and can only imagine the fear of not really wanting to find out what was going on under hear gorgeous hair. I will pray for your sweet Aviana, and for you and Dave, as you see her through this surgery. I'm very sorry about her beautiful hair, also. Knowing your classy style, though, I know you will find some very creative ways to keep Avi looking very adorable in hats, bows, and headbands...because that's what you do...the very best for your daughter. That's not to try to sound that I don't realize the seriousness of the situation at all. It's just to try to encourage you to know and believe that you can get through this,with God's help and the help of those who love you and your family. I know that youand Dave will help Avianna by once again being her strength and best advocates. I will be praying for strength and courage.
    Nancy in the Midwest

  5. awww sweet boneheads are NOT always funny.

    i totally understand about the veil.... i spend the better part of year under it when we were taking care of my dad. it's how we cope and get through 'each' next step.....

    from the sounds of this, while definitely serious, the doctor doesn't seem to feel URGENT about the situation. and not feeling urgent is a good thing!

    you and dave and your entire family will advocate and cheer her on and sweet avi will continue to teach you about strength and fighting against the odds to be her very best

    me ke aloha pumehana

  6. Oh Jen, my heart just aches for you. I know how scary it must be. Especially to have to deal with more surgery. A year after Jimmy had his plate put it, he felt as though two of the screws were going to come through. Though the doctor said it was just his head and brain "settling" we went through all kinds of testing including a digusting bone scan test. Fortunately, the doc was right in our case it was just settling and would go no further. Scared the beegeez out of us. It still scares jimmy, when he has pains there he'll still ask me, "look and see if you can see my screws" - Such a miracle what medicine can fix, but then add a whole other element of fear. I'm sorry that Avi's plate has to be fixed, I'm sure she will be fine, but I know the last thing you want to deal with is this.
    Love you, big, huge, hard hugs.

  7. Oh, Jen :(
    This is so hard. It's so hard and so very unfair that our girls can't just have THE accident be the end of it, you know? As if that day and the aftermath weren't bad enough, but then these things pop up to remind us that it's never over. Over here, we were going along just fine....the accident behind us, and Audriana improving in small little steps along the way. And some 11 years after her accident she starts having seizures. I was like, What The Heck?!! Are you kidding me? There's MORE to deal with? Now she's on meds for who knows how long. And she has quite a big "dent" on the left side of her forehead. It wasn't always there, but slowly over the years it has gotten deeper and more pronounced. Her neurologist doesn't seem too concerned. She doesn't have screws or plates in her head, but the material that they used to patch her up was supposed to dissolve into her bone. I'm wondering what went wrong with that because she sure does have a dent! And it wasn't like that the first few years after her accident.

    I'm so sorry Avi is having this problem with her plates. It's so unfair! Now, while this may seem petty on my part, but I'm thinking OH NO! They will have to shave her head for the surgery!! Of course that's trivial compared to the seriousness of her skull, but her hair is gorgeous! Too pretty to shave away. I wish there was another way to fix those shifted plates without messing with the hair!

  8. Well! :( That just totally is unfair. I thought I was just being shallow about the impending loss of hair (what I call the Children's Hospital haircut), but I'm glad to see I'm not the only one who sees that as the ultimate unfairness. I hate surgery, but I trust the neurosurgeons and the anesthesiologists who routinely operate on children to be good at their job, but still, it just sucks! I feel like Aviana has been through "enough". I don't know what the definition of "enough" is, but I think I know it when I see it.
    Love and hugs to you....all of you!

  9. Oh man, I am so so sorry that this has come up.

  10. I hate this post. Double hate this post. :( :( :( :( :(
    Everything will be fine, no doubt. But, I still hate this post. I am so sorry that you have to go through this. I hate this post. :(

  11. Oh that poor, sweet girl. She's been through so much, as have you.

  12. Hi Jen,

    It's never easy facing the news of an upcoming operation on your child. I'll be praying for you all.

    Carol (Philadelphia)

  13. I am so sorry to hear this. Praying for little Avi and you and your hubby. (((HUGS)))