Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Friday, November 18, 2011

Neurosurgery Follow Up #1

Meagan had her follow up with the Neurosurgeon yesterday.  Overall it went well.  The NSG (Dr. Reisner) was very happy to see her - he is such a great doctor, and even better, a wonderful man to work with from the parent perspective.  He is very good at balancing information without overworrying the patient's family.  I was giggling to myself because the first thing he did when he came in was vent about another patient he was dealing with.  His first words to me were, "I'm so frustrated. May I tell you something?"  Of course, I said "Sure."  He went on to explain, without using too much detail or any names, that he had another patient he was working with who had multiple head injuries from a specific activity he did over and over again.  It was to the point now where Dr. Reisner would not sign off on it anymore because he felt this person was at the end of his 'luck' with brain health .... in other words, he felt if this person had one more traumatic head injury, he was going to seriously damage the brain or worse.  Dr. Reisner was frustrated because he said the patient and the parents were mad at HIM for not signing the papers! He said he did not understand this because then he sees patients like Meagan, who didn't have a choice in her brain damage, and who would give anything to have a healthy brain.  He said "Some people just dont' understand what they have."....  I could appreciate his frustration because I imagine he is looking at this otherwise healthy person and thinking "You have a HEALTHY brain.. quit killing it by doing a stupid activity you can CHOOSE to stop doing."  Sigh.

He continued with the exam - he measured Meagan's head.. it is still around 43 cm.  He then looked at her sutures.  Her ridges were extremely pronounced but looked good.  He wasn't worried about overdraining as of yet, but, because of how overlapped her sutures were, he became concerned that they would begin to fuse prematurely - which would not be good because it would restrict brain growth and he would probably have to go in surgically to break the bones apart again.  He decided the best "solution" was to play around with her shunt by re-programming it to a slower flow.  His hope was that he could add just enough fluid pressure to press on those bones and pull them apart a bit, thereby avoiding early fusion... but not add too much pressure where it starts to affect her behavior and brain health again. 

Once he re-programmed her shunt, he took a look at her CT scan she had at the hospital.  He was happy about the brain growth - he put the picture next to her scan from birth.  On her birth scan, you can see nothing but fluid - on her current scan, y ou could see about a centimeter of brain around half to three quarters of the interior of the skull.  Dr. Reisner was happy with this and said the brain was starting to 'fluff out' and hopefully it would continue to do so in a successful manner.

 One thing he found that he wasn't happy with was additional fluid in another part of her brain.  He explained that the other fluid we saw towards the back of Meagan's brain was probably a large cyst in the posterior fossa.  In some Hydro kids, this can indicate other brain abnormalities or syndromes, so he said it was something he wanted to keep an eye on.  First, because he may have to go in surgically and insert a second catheter directly into this new fluid area and link it to her original shunt so it also starts to drain.  Secondly, because of the location of the cyst possibly indicating other brain abnormalities, he wants to watch it and see how the brain in that area ends up fluffing out... so he can see if any of these other abnormalities do exist.  When I pressed him on what it could mean, he simply told me... "We can't see that brain yet ... we don't know what it will look like anyway, so no need to worry.  Just enjoy your baby."

He's right - Sure, this new "find" could certainly indicate more problems for Miss Meagan later this year, however, we just don't know.  We can't see beyond the fluid.. we can't see beyond the cyst. So we have to wait and see at her next scan what this cyst is doing, and how the fluid is now building near the base of her brain.  What we do know is that it's something we have to watch - so, back to the original "mantra" of a Hydro diagnosis...... watch, wait, and see.  It's just hard to swallow when you are hoping for only good news, and you get that "...but..." with a whole new reason to worry.

It has only been one day since her shunt was re-programmed, and her head circumference is already up 1 cm.  Her ridges are barely noticeable anymore.. and I can tell her fluid level is higher.  Hopefully she adjusts ok to this new pressure setting so that we can avoid those bones fusing already.  She has been a little more irritable tonight, but, not overly fussy and no behavior changes... so I think she's just trying to adjust to the new shunt flow.

Overall I'm happy to see her brain is starting to fluff out - but I'm also nervous that there are now two new issues which could land Meagan back in the OR in the next 4-6 months. I'm also still concerned about her muscle tone and the way her body is twitching all over.  The poor thing cannot be comfortable.

I was talking with Amy's husband (Claire's dad) who stopped by to see us another day at Children's about how I completely forget where Meagan "should" be until I look back at what my other kids were doing at this point. I still look at Meagan like she is so tiny -- this little 2 day old newborn who is so sweet and just lays there most of the time.  Then, I will look back at my other girls' photos - and realize that by 4 or 5 weeks old, they were laying on their bellies, holding their heads up - and by 6-8 weeks, they were looking around, smiling, cooing, laughing, and starting to really develop that personality.

Meagan is now 8 weeks old, and while she does have her alert times,she isn't focusing or tracking yet.  She will 'stare' in the direction of things, but isn't quite "looking" at specific items yet, and her eyes do still roll or travel quite a bit, sometimes in different directions, which is always a little strange to see!  She doesn't smile, coo or laugh yet.  And you can forget about head control at this point.  But I have to keep reminding myself - even though my other kids all developed differently, they also didn't have anything fighting against them.  Meagan has her Hydrocephalus fighting against her every second of every day - so I need to celebrate what she CAN do, and know that everything she is supposed to accomplish in her life, will fall into place in time.  So I am going to conclude this entry by celebrating Meagan's accomplishments so far and keep looking forward to all the new things she will show me she can do this coming year.  To date, Meagan is a rockstar because of  kicking out her feeding tube, nursing successfully, grasping my finger when placed in her hand, staring towards light when turned on in a dark room, crying to let me know she is dirty or hungry, and pausing when upset if I touch her like she knows I'm there.

 Love you Meggy - keep fighting!

Big sister Reilly giving Meagan a little "music therapy"


Big sister Maura giving Meagan her morning hello

What Meagan looks like after she passes out (quite literally!) from her muscle twitching episodes

The look on her face pretty much sums up what she thinks of "tummy time."  I can't say I blame her!

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