Neurosurgery and Pediatrician Update January 2013

Meagan had a few doctor appointments this week.  The first was her 15 month old check up at the Pediatrician (a little late at almost 16 months. Oops!)

First, Meagan's stats:
Weight: 14lbs 10oz.
Height: 29 inches
Head: 41cm

She is obviously still very underweight for her age, but, her Pediatrician is very good about it.  Dr. B said it is quite apparent Meagan isn't 'starving.'  She looks healthy and has an appetite.  She just had a rough start and some struggles getting going.  Dr. B said she is still concerned because Meagan gained a few months ago, then lost over a pound, then gained again, then lost....with no changes in her eating habits/patterns.  She doesn't like the unusual fluctuations with her already so behind in weight gain. However, she said she likes to stay positive, and thinks that giving Meagan another month to gauge her weight gain is perfectly acceptable.  She wants us to log what Meagan eats, and also call back in a month to give her the new weight.  If we are still working our way up the scale, we are good to keep watching.  If Meagan has another random dip, we may be revisiting the GI doctor to discuss more "tube talk."

Height is fine.  Her head circumference, ironically, is in the 2nd percentile.  (probably due to her severe synostosis).  She got her vaccines up to date and did really well at the appointment.  Except for our weight check in 4 weeks, we don't have to go back now until 18 months old.  Crazy how time is flying for my big girl! She is growing into a little toddler!

We also had her follow up from her December Neurosurgery appointment today.  To recap the situation, she had a large crater sink in her head literally overnight and became very fussy.  She wasn't tolerating sitting up anymore for longer than 1-4 minutes when she had been able to work on sitting for an hour.  She wasn't sleeping well in any position except flat and had also slowed down in a few other areas. Dr. R turned up her pressure two notches on her shunt valve in hopes this would solve the problem at least for now.  We have seen her head change drastically in the last four weeks.  It has really puffed out and she seems a lot more comfortable.

Meagan the morning her head sunk in

Meagan 2 days after her shunt reprogram - hints of fluffing out

Meagan 3 weeks after her shunt reprogram - totally fluffed out 

Today we first went for a CT scan for Meagan.  During the CT scan, they also put together another 3D reconstruction of Meagan's skull.  Knowing her head had puffed out, I was pretty sure the fluid did its job, and her bones were fine....but, to be sure Dr. R wanted to make sure all the plates and spacers were still in their correct places from her cranial surgery since it was just in September.  After the CT was finished we walked over to Dr R's office where he explained what everything meant.

Watching the ducks on TV before the scan

In short:
1.  Meagan's vents still look ok.  It is now just a monitoring situation and hopefully will continue to be stable for a while.
2.  Meagan's shunt looks good - it doesn't look to be pressed on, out of place, etc..etc.. so we are crossing our fingers our luck with her shunt will continue.
3. Meagan's plates from surgery are still in tact and in place.  The fluid has pushed out her head nicely, and everything from her cranio surgery in September seems stable.
4. Two of Meagan's sutures have slightly overlapped again and fused - the very top and the back. But, Dr. R is not concerned at this time with intervention.  He said since the front of her head is still nice and open, brain growth should still not be restricted.  Dr. R said to go in and do a cranio surgery for those small fusions would be ill-advised at this time considering the risk of the surgery and the fact that as of now, there seems to be no Neurological consequences for leaving it alone. He said if I really pushed him and wanted it done, he would, but it's not advised for cosmetic reasons in Meagan's case.

Side view of Meagan's skull - the left is the front of her skull from the side.  The huge space is the large area where she doesn't have bone anymore that they left open for brain growth.

Front view of the bones post-surgery.  You can see her top of her skull, then the large space, and the few pieces in the front.  The 'squishy' stuff behind the front bone is her brain! And the "stick-like" figure in the front is a view of her shunt going all the way through her head.

View from the side/back.  You can see where her top and back bones have decided to overlap and fuse again...stinkers! But, with the space in the front still leaving "breathing room" for her brain growth, this is no reason to risk a cranio surgery at this time.

Meagan's CT scan from today.  The white-ish areas you see is brain tissue.  The black areas you see are areas of missing brain.

No complaints here on Dr. R's recommondations! I'm very happy with not pushing him for surgery!   I am very glad we have a Neurosurgeon who is thorough, and only goes to the OR when absolutely necessary to Meagan's development or brain health.  I am happy Dr. R is not "surgery-happy" as some surgeons can be, and that he always sees it as a last resort.  He truly has Meagan's best interest and uninterrupted development at the forefront of his focus.  He said he will watch these areas closely, and if it ever becomes a true issue, we will go from there.

FINALLY.. first food after her scans!

All in all, a very positive day.  The only "negative issue" with Meagan's new shunt setting has been her sleeping in the crib.  We had just worked on sleeping in the crib in hopes of moving her into the room with Maura.  But, now she cannot tolerate sleeping flat for more than an hour or so.  Any longer than that, and she wakes up with a puffy head in front that is tense and full of fluid, and I imagine, she is uncomfortable. As soon as she sits up for a while again or lays at an angle though, the soft spot bulge relaxes back to being squishy and she falls asleep inclined. But, she is flourishing in her other areas again, and is happy so I use the word "negative" very loosely.  All in all, things are looking up ...  Meagan is just one of those kids who seems extra sensitive to any pressure changes, so, for now, we will just sleep upright and take everything else for the good!