Today, Katie met the neurosurgeon or the neurosurgeon met us, or whatever. At any rate, Katie met the neurosurgeon. Hereafter known as Dr. G.
We dropped Ben off with another of our wonderful friends and headed out to Davis Island where Dr. G’s office (one of them) is. Nice facility with valet parking (go figure), but it does make it very easy to get from the car to the next locations with a small baby.
We went up to the “academic offices” in the building looking for our contact person. We were informed that she wasn’t in yet for the day, but to have a seat and someone would be with us shortly. Much to our surprise, it was Dr. G. She was out of surgery early, we were early, so she figured we should just get started.
She is very calm and seems to really know what she’s doing. Of course, she thinks Katie is adorable (I wouldn’t be her mom if I didn’t agree with that assessment, would I?). At any rate, the exam was fairly, well, short.
She measured Katie’s skull, looked at her feet, checked her movement of her hands, neck, and so forth. Then we unsnapped the bottom of her outfit and slipped her diaper off to check her bottom. Apparently, it’s “asymmetrical” — I’m wondering if that means she’s going to have trouble with bathing suits when she’s older. She checked hip movement and all of that other fun stuff.
She then explained to us what, from her perspective the surgery entails and what we need to be aware of and what “options” we have. The short version is we have no option. Katie’s eye sockets are not developing “normally” and must be reconstructed, which is a major part of the surgery. She showed us, on Katie, where the sockets should be and the shape of the eye as it should be and how Katie’s are, now, quite obviously not in the right place and not the right shape, which could cause problems down the line.
She explained that the surgery will involve a cut from ear to ear on Katie’s head. Because Katie has inherited my hair (for those who know me IRL, you know what this means; for those who don’t, curly and fine), she wants to do the cut in a wavy pattern so that it can be better hidden by her hair. She suggests, though doesn’t require, that we let them shave Katie so that she is completely bald. So, I’m guessing her 1st birthday pictures are going to be unusual (Auntie ML — have a solution for that?).
Once they’ve made the cut and peeled back her scalp, they will cut and remove her forehead area and reshape it. They will reshape the eye sockets and smooth out the ridges, put in spacers and so forth to promote growth. They’ll close up and use either paper tape or absorbable sutures. Katie will the be in the ICU after the surgery.
She said it won’t look too bad immediately after the surgery, but by the morning following Katie will be very, very swollen. We’ve been warned, by others, that she will be so swollen that her eyes won’t be able to open. She will be able to take a bottle in the recovery room and she’ll be eating and so forth fairly quickly after the surgery. She’ll be released three to four days post-op assuming no complications.
The potential for complications is a little scary, but she says she never seen one of these have the potential complications, so we feel a bit reassured. Potential complications include tearing of the brain covering or damage to the optic nerve or the eye itself. Again, she says she’s never seen it happen, but because of where they’re working, the potential exists so she has to inform us.
Katie should be released three to four days post-op depending how she’s recovering. Once she’s home we will have to care for the surgical site. She will be seen by either Dr. R or Dr. G at seven days post-op, and then by the other one a few weeks later. Apparently, she’ll be seeing them both intermittently for a while, but they trade off who she visits each time.
The chances for the need for further surgery are fairly small because of the type of stenosis that she has. Because both eye sockets are involved, instead of just one, it lessens the chance that she will need to have her head further dealt with at a later time.
Next up for Katie is a trip to the pediatric ophthalmologist and the scheduling of her surgery date.
It does sound very scary but so glad that the doctors seem so caring! Is this a very uncommon development in children?
Here’s a description: http://www.skullbaseinstitute.com/trigonocephaly.htm
It is not common, particularly in girls.
It sounds like it went smoothly even though the appointment’s content must be intimidating to hear.
Bottom asymmetry sounds like something only the acute eyes of a surgeon or an artist would notice.
It did go very smoothly and she did a great job of putting us at ease. I feel very comfortable, so far, with the team. I want to know, now, how the anesthesiologist is decided upon. Because that seems like the remaining variable in the operating room.
I’m hoping that we are as comfortable with the ophthalmologist (look, I figured out how to spell it) as it appears we’re going to be with her for some time.
Actually, from what we can tell, it appears we’ll be having check ins with at least two member of the team every year for several years.
Thank goodness you have such a caring and nice doctor! I will be thinking of you and your family as Katie prepares for this surgery.
We are very lucky that our pediatrician was on top of it and that he recommended Dr. R. We’re grateful that she recommended Dr. G. I think we have a good team for Katie. Now just to get her through this as best as we can.
All of that sounds scary and nightmarish to me in some ways, but at the same time it sounds like you have confidence in the doctors involved and understand what needs to be done and why and that would certainly make me feel better about things. Also, it’s apparently clear that it is what is best for Katie so you can have confidence in the decision as well.
I’m thinking about all of you, and I’m always willing to be an ear for you, I hope you know that.
Scary and nightmarish are good words. They keep reassuring us that complications are rare and that they’ve never seen them happen. P broke and finally said, yeah, and that’s what we were told about Beth having a second child in the first place. I then got to explain everything that happened. Poor Dr. G wasn’t quite prepared for that, but now she understands, better I think, why P is having such a hard time with this. And the mere fact that Katie will have to stay in the PICU for at least 1 day is terrifying to him.
Beth, I apologize for not keeping up on the lists.
I’m holding you all in heart, thought and prayer for a successful surgery, recovery and future ~!
Sounds like you’re in the best and most capable hands to handle all this.
Take time out for YOU kiddo ~
Peace and comfort !
No worries, Ang.
I really haven’t been talking a lot on the lists about it. This is where I’m letting it all out. I think some folks know about the site, but some don’t.
I thank God every day that P wore down my concerns about Dr. D. He’s the one who first tripped on this and he was right and he’s sparing Katie (and us) untold amounts of angst later by forcing us to take this concern of his seriously.
I will try to remember to take time for me, but between Katie, Ben, and Sam — it’s tough. Old dogs and small kids are free time/me time killers in combination.
You guys know that when I read these updates I just want to deliver an in-person giant neck hug… We’ll figure that out very soon, but there’s a “good wishes” virtual neck hug coming out all the time. You’re on our minds so many times a day.
We love you all and know this will be tough, but it will get done, and will work out. We’re here with you. Keep holding on, as it seems you have a great team in your corner.
No worries — we’ll be calling on you. We’re hanging in there. This is my therapy :).
Oh, your poor baby! And YOU poor baby! Here’s hoping everyone comes through this with flying colors.
I’ve been thinking about you and hoping the transition is going more smoothly now. And if not, I know you’re going to get it there. Have faith!
Beth- you ALL are in my thoughts and prayers..and God Bless your pediatrician for being so on the ball and noticing something not quite right~ Never fear, Auntie ML does Chapeaux! Our little miss can look forward to a wardrobe of hats! LOVE to you all! Mary Lynn
We thank you so much, ML! We’ll be getting in touch about winter holiday/birthday wardrobe shortly 😉
We are completely blessed with our pediatrician. P was very stubborn and insisted that I meet him. I am very comfortable with him and am so thankful that we took a chance with him. He’s in a solo practice, which made me nervous, but not anymore.